Stories of hope

Tommy

Tommy was born with a severe Congenital Heart Defect called, Hypoplastic Left Heart Syndrome, in which the left side of his heart was underdeveloped and unable to sustain sufficient profusion of his body, outside the womb.

Tommy was born in the midst of a bad Michigan snowstorm at the University of Michigan C.S. Mott Children's Hospital in Ann Arbor on December 10th, 2000. Seven days after birth he had his first open heart surgery at UofM by Dr. Bove, called the Norwood. Thankfully, it was a success and we were home shortly after the New Year. Many bumps came along our road the first year in regards to his eating, weight gain, etc. Tommy had his 2nd open heart surgery at almost six months of age (the Hemi-Fontan), followed by his 3rd (the Fontan) at 20 months old.

We thought we were "done" for awhile after these, but to our surprise, his tricuspid valve was severely leaking which lead to a 4th open heart surgery to attempt a repair of the valve at age 3. The repair 'held' for about a year and then required a 5th open heart surgery to replace the valve with a mechanical one in June of 2005 at the age of 4 1/2 yrs. old. Shockingly, 5 weeks later, that valve clotted off and shut down, causing the larger, right side of his heart to also stop working. The doctors were unsure of what would happen next, so we began to pursue listing him for a heart transplant. Within 2 weeks, God showed us that He had a different plan and Tommy's body and small left side, began to 'compensate' and profuse his body effectively (not requiring heart transplant listing). We were so thankful and went on to have almost 3 years of somewhat uneventfulness and 'normal' living.

In the spring of 2008, Tommy began showing more signs of heart failure and our worst fears were confirmed that his heart was indeed doing more work than it could. So, on June 9th, 2008, Tommy was listed for a heart transplant. After a long year of waiting, in and out of the hospital and on a 24/7 med pump to keep his heart going, our prayers were answered and a miracle was given just when Tommy's native heart was about to give out. On June 3, 2009, Tommy received the gift of life. He had a rocky first year, but his energy has tripled and he feels like a 'normal' kid again. He is still having adjustment issues, but we are trying to be patient. We think about and pray for our donor family daily as they gave such a selfless gift in the midst of their darkest hours.

Tommy has a love and zest for life that is contagious and truly unbelievable. He makes us laugh everyday! He is a blessing to our lives and so many that he touches. Without our faith, family and friends and all of their prayers and support we could not walk this road.

Brandon

Hypoplastic Left Heart Syndrome – HLHS

Our miracle was born 12/29/00 weighing 8 lbs. 4 oz.

We found out about Brandon’s heart defect at our nineteen-week ultrasound and were immediately sent to a pediatric cardiologist who confirmed the findings of HLHS. We were given three options…heart transplant, three-stage surgery or termination. We were devastated…no one we knew had ever heard of this rare yet severe heart defect. We spent weeks researching HLHS, talking to doctors, surgeons, pediatricians, websites, friends, family and finally made the decision to have the three stage surgery and to put all of this in God’s hand’s, we prayed for the best and prepared for the worst.

After thee open-heart surgeries – his first when he was eight days old, his second at six months and the third at three years old along with many long and difficult roads and a journey that will never end, we have a beautiful, happy little boy that is so full of life and is truly a gift from God.

We have no idea what the future will hold but we cherish every moment with Brandon, have learned to live life one day at a time and to enjoy each minute of it.

We have also met many wonderful people along this journey we call HLHS from the cardiologists, surgeons, doctors and nurses to the friends we call ‘Hearts of Hope’ without out their love and support I don’t know how we could have gotten this far, we have learned that this devastating congenital heart defect has come with many wonderful things.

Brandon is 11 years old, he will start 6th Grade in the fall. He is full of life and has non-stop energy. He enjoys swimming, riding his bike, playing computer games and loves his big brother Nick.

We are blessed…

Emerson

A Dad’s point of view…

It started with an ultra-sound like many others. The technician asked if we knew what that arrow was pointing to, and guess what? “IT’S A BOY!!!”

I was ecstatic!! This was my first child. Boy or girl, I don’t think it would have mattered, but somewhere in every man we want a boy. Jill and I both had “perma-grin”. An hour later a doctor was telling us that the left-side of his heart was too small, his aorta was too small and his mitral-valve was not working the way it should. We were told he has a congenital heart defect called Hypoplastic Left Heart Syndrome and given some “options” or ways of dealing with it; termination of the pregnancy, compassionate care, a heart transplant or a series of open-heart surgeries. We were devastated! We chose to fight for this little boy with this special little heart growing inside. We chose the series of three surgeries.

I dug in. I was not going to let anything happen to my son if I could help it. The internet is a great thing, scary, but great. There is a lot of old information, old statistics and old survival rates, but I found what I was looking for. I found a way to give myself hope, a chance, as well as success stories from all over the world. Now that there was a viable option we would have to be strong and get stronger. I pretty much adopted a motto from the great basketball coach, Jimmy Valvano who died of cancer. During his fight he would say, "DON’T GIVE UP, DON’T EVER GIVE UP"! I also stressed that we had to plan for getting through all of this and getting home. If you plan to fail, I think you will. So we had his baby shower and did up his room and I think I bought him something every time I was in a store. We were six months pregnant and his room was pretty much ready.

We planned everything from pre-natal care, to an induction date, fetal echos on his heart, to getting the final details finished on his room for him to come home to. It was set in my mind that everything would work out, that we would do everything in our power to give him a chance at a normal life. If things didn’t go in our favor, I would know that we did everything we could and there wouldn’t be any “I could of done this” or “I should of done that”. We were ready to have a beautiful baby boy, to be named Emerson David, both are names of his Grandfathers. Strong names! Have you ever heard of David and Goliath?

Emerson was born Jan 18th, 2002. He was strong from the start, crying like crazy, and put right onto his mommy’s belly. We touched him, held him and took lots of pictures. We even have a great video of everything. After some time they took him to be cleaned up and prepared for his hospital stay. We were new parents and it took me a few hours to realize that I could actually see him now, all the time. I got to bathe him the first night. I was a total rookie, and I had to be careful with the IV’s and monitoring lines. I made my decision right then that I wanted to take care of him as much as I could, hospital or not, because I was given this gift, this opportunity by God to be a Dad and I needed to take full advantage of that every minute of every day. So we both changed his diapers and held him as much as we could. I would sing to him, talk to him, and tell him stories. The night before his first surgery he looked me square in the eyes, and we had a strong moment. I cannot explain how much that moment means to me. When you stare into the eyes of your newborn of whom you are handing over to surgery the next day, you’re not just looking into their eyes thinking how beautiful they are, but praying you get to stare into those eyes again, wanting to protect them, give them all the love you can possibly give in the shortest amount of time possible. Let them know this world is really NOT like this, with blood draws, IV’s and monitors, it will get better. When he looked at me with his eyes, it felt like he was telling me that he loved me and he was going to fight like I was and get past all this and see what life was really about. I told him that I loved him very much and that his mommy and I would be with him through all of this and that we will all go home together soon.

After his first surgery, the Norwood, there were plenty of bumps in the road. We were told that Emerson would need to stay in the hospital until he was big enough to have his Hemi-Fontan. Again, this was devastating news, but Jill and I settled into our routine. We stayed at the Ronald McDonald House. We would get up at 5am. I would drop Jill off across the street at the hospital and I would drive 1 1/2 hours to work. After work, I would head back to the hospital and have dinner with Jill next to Emerson’s bed. We played CD’s for him, sang songs, gave him baths, and held him. We held him a lot, he really was much happier that way. This was our family life, cramped into a hospital room, eating dinner off the bedside table the nurses do their charting on, sitting in a hard chair while your newborn son fights for everyday of his life. There was no place else to be. Yes, it was a hard 3 1/2 months of waiting, struggling, and bonding, but the day finally came when they wanted to move forward with the Hemi. He was small, but it needed to be done.

Emerson had his 2nd Surgery, the Hemi-Fontan when he was only 12 weeks old. We waited for good news. The O.R. Nurse came up and said that the surgery went well, but he was small and his recovery would be slower than normal. After about four weeks Emerson was strong enough to be discharged. He would need a lot of special care at home but we were FINALLY coming home.

There were several medications, 10 to be exact, the oxygen generator, his saturation monitor, a feeding pump, tubing running everywhere through our small house and EMERSON, buried underneath it all, swaddled in a blanket to prevent him from pulling anything out. Jill and I worked out some “nursing” shifts to take care of him and get some sleep. My wife, being a Registered Nurse by trade made it easier than I think it would have been, not that any of this was easy but she really is incredibly smart. For a month we slept on the couch while he slept in a bouncy seat on the coffee table or his bassinet in the living room. Eventually we moved the bassinet by our bed and in a month or so after that he was sleeping in his own bed. He slowly got better. Day by day, week by week, month by month. He had some motor skill delays, but soon things were pretty normal. He rolled over on his first birthday and by the end of that week he could roll all over the place. He was soon creeping along the furniture and getting quite a personality. He loved to laugh and play. By the end of summer he was starting to walk and having even more fun. He loved to go get books, come back, hand them to me and then sit down on my lap while I would read. He loved Green Eggs and Ham, who doesn't?

His Fontan came that September. This surgery was pretty hard for Jill and I to prepare for because he was doing so well, he was older, had a great personality and was a part of us. We were a family. He did well through surgery with only a few bumps this time. We stayed for about three weeks, a much shorter stay than the last one. We came home and had to return back to U. of Mich. in about a month to have a g-tube and nissen-fundoplication surgery done. This was done to increase his nutrition and keep him from throwing up his food all the time. Recovery was slow, but when you look at him today you would never guess our little boy has overcome such high hurdles. He has had three open-heart surgeries, seizures, a stroke and two other surgeries including the gastric tube placement. When you look at Emerson today you see a three and a half year old little boy, full of energy, full of LIFE. Thank you God for giving me this gift, I have taken a lot of things for granted in my life, but this time I didn't, and Jill and I can't wait to see him grow up ONE DAY AT A TIME!!!

~Michael, Proud Dad of Emerson

Addy

It was 6 pm, on May 8th, 1993 when my wife gave birth to the most beautiful baby boy I had ever seen. He was peaches and cream and almost 9 lbs. His grip was powerful, enough to allow the nurse to lift him from his warming crib with his fingers alone. His name: Addison Thomas Ward or Addy, for short. Addison, the name of his maternal grandfather died in 1989 fighting Lou Gehrig’s disease, and Thomas, the name of his uncle Tom, my big brother, was killed while sitting on his motorcycle in 1983 by a sand hauler at an intersection in Florida. Two good, valiant men who we knew, would be in Addy’s corner for the rest of his life.

The volume of Addy’s crying that echoed through the corridors, outweighed any that I had heard before and I thought to myself, ”what a set of lungs this little fella has.”I stayed as long as I could but decided to let my wife, Linda and my newest son get some well-deserved rest and be back as soon as possible the next morning. During the night, the nurse on duty noticed Addison’s complexion turn a dusky blue and alerted the head nurse to what she was seeing. The head nurse discounted the observation and told Addy’s nurse to forget about it. Luckily, Addy’s nurse was not about to set aside her instincts and alerted the resident pediatrician as to her observations and he examined Addy and found that he indeed could hear a defect within that perfect little chest. Linda was awakened and informed by the doctor that he didn’t think it was serious, but dutifully wanted to inform her.

The next morning, our new pediatrician, Dr. Gendleman came by to check on his new patient and was alerted by the “washing machine sound” that the good doctor had heard before in one other baby, Robert Sparks. Dr. Gendleman advised us that Addison should immediately be taken to Childrens’ Hospital for examination and diagnosis. He was pretty sure he was hearing that familiar sound once again. Addison needed immediate treatment and surgery.

We will always be indebted to that particular night-nurse on duty (name unknown) and Dr. Gendleman for doing what we think, saved Addison’s young life.

Linda had just given birth, hormones flying and now we were chasing an ambulance to Detroit, weaving through traffic trying to keep pace as not to lose our way.only to be left at a stop light………..lost. Our baby was no longer safe with us, but as it turned out, safer with strangers. We finally found our way to the second floor, the cardiac wing in Childrens’ and alerted the staff there of our plight and wanted some news about our child. Minutes which seemed like hours went by and two doctors, cardiologists Drs. Robert. Ross and Julie Vincent escorted us to a private room for consultation. It was there we were given the news that we were deeply, in the beginning of; a horrible nightmare; a nightmare that we were not to awake from for quite awhile. Our little Addison had a very serious and possibly the worst heart defect known, Hypoplastic Left Heart Syndrome. He needed immediate surgery to stay alive and his chances of recovery were slim to none. Pictures were hurriedly drawn on the back of an old faxed piece of paper, trying to explain this defect, and we then were given three options:

  1. The Heart Transplant. The new-born child procedure could only be done at Loma Linda Hospital in California at that time and we would’ve had to relocate there for possibly a year to get a donor heart.
  2. The Norwood Procedure: a new three-stage surgery that could be performed right there at Children’s. It was risky surgery and which had sketchy, limited success on previous children. The Norwood Procedure was the first of three stages; the Hemi-Fontan, the second and the Fontan was the third. He may or may not survive any of the three we were informed. The percentage of survival was surely not in Addy’s favor.
  3. Take our new baby home and make him as comfortable as we could while funeral arrangements were made.

Thoughts of my two older boys, Terry Jr. and Ryan raced through my head. I visualized them both at one, two and three years of age and imagined to myself………..losing THEM at those ages. All of this……….this nightmare!…and my poor wife, Linda. Today was Mother’s Day, 1993.

We didn’t have much time as we used the hospitals’ library to research any information available. There wasn’t anyone to contact for direction because there weren’t any known survivors! We didn’t know what to do until we were told by another set of parents, The Dunns, of a wonderful world-renowned surgeon, Dr. Hakimi, chief of cardiac surgery, here at Childrens’ Hospital. He, Dr. Hakimi, (now retired) our hero, is the dearest, kindest man we have ever known. The gentle eyes of this man made us know what path to take as we thanked God and tearfully decided to put Addison in his experienced hands and perform the Norwood Procedure.

Addy was now four days old, pumped full of Prostiglandin-E1 and feeling the effects, underwent the first of the three surgeries. We prayed to and thanked God for His taking us to this place for our baby’s care. The surgery went according to plan and the doctors were cautiously optimistic. “Things can happen very quickly to babies after surgery” and he was watched very closely. Dr Hakimi told us that the next 24 to 48 hours were critical. We were allowed to be by our baby’s side at all times except shift change. We took turns day and night and stayed at Ronald McDonald House with our two other sons.

The Ronald McDonald House is and always will be in our hearts as an oasis for rest and companionship.

Twenty-four and then forty-eight hours went by and everyone began to breathe sighs of relief. On day five, Addy’s little chest was closed as everything was going fairly well. Dr. Hakimi told us on occasion that Addsen (that’s how he pronounced Addisons’ name) wouldn’t be out of danger for seven days, and to not relax.

Day number seven: Linda and I, encouraged, went to Addy’s room in ICU after shift change. By now, we had learned how to assess him immediately upon arrival, by looking at his color, his tubes, the rows of machines and the read-outs and most importantly, his “SATS”. A drainage tube checked earlier had been dry, but now showed a hair’s width trickle of blood easily overlooked but upon lifting the baby’s blanket; Addy was hemorrhaging. I screamed at the nurse and within seconds a team of surgeons took Addy away and rushed him into surgery. Dr. Hakimi came to us and said that Addison had lost all of his blood and to prepare ourselves for the worst. This was a first negative word experienced from Dr. Hakimi. He said that “baby was losing blood as fast as we were putting in”. Hours went by before Dr. Hakimi came to us. We were devastated by now and held our breath as he proclaimed in his own words, “I have witnessed a miracle! 99% of any patients would not have survived. This was indeed a miracle!”. The little donor patch, sewn on the side of Addy’s aorta, had literally blown out; something unheard of before this time.

We knew then Addy would survive the other stages. We knew that he was destined for something great someday and we are now, lovingly and patiently waiting.

Addison has had three other surgeries since that time and did well with all of them. The information gained by subsequent procedures has surely helped others born with his defect. Our little man was so weak that he couldn’t suck from a bottle or his mother’s breast and had to be gavaged repeatedly throughout the day. Linda used a breast pump and put her milk into vials to be refrigerated. I’ll never forget the look on my mother’s face the first time she saw us feed her newest grand-child, with a syringe with its’ long, stringy tube inserted into Addy’s nose and down into his stomach.. I thought she would faint! Addison thrived and grew stronger but never crawled like other babies. He went from sitting up to walking within his first year. His little legs were skinny but they were strong. His next procedure; number two, actually his third surgery, was as extremely dangerous as the first. I believe it was called the “Hemi-fontan”. Our little boy was getting closer to his goal. His little half-a-heart was going to be even better and stronger; another step towards becoming whole. One of the most memorable times was when we were allowed to see Addy in recovery. He had completely changed from a beautiful blue baby to a beautiful pink one. His hair even looked more blonde and curly. We brought him home and watched him grow.

Now, when we see a new baby, we love to see that it’s healthy and full of life. A healthy cry sounds so welcome after spending time in NICU.

Addy was now three and the clock was ticking. I hated the thought of knowing that my always-smiling little boy was going to be opened up again for his final stage. I hated it, had nightmares and awoke crying but had to trust the surgeons to take him to the limits of his becoming a strong and normal child.

His third procedure went as planned and we brought him home again, but this time things were a little different. Addy, when big enough, slept between us. It was for him and it was for us too. We would listen to him breathe and Mommy would rest her hand on his chest to feel a beating heart. One night his breathing was rapid and short. His chest cavity had filled with fluid and left little room for his lungs to inflate. We took him to Childrens’ and chest tubes were inserted for drainage. It was during that visit that Addy was introduced to the VCR. He loved the cartoons and fell asleep watching them in his hospital room.

We decided to build a swing set in the back yard. It wasn’t going to be a normal swing set, no, it had to be special; a real play center. I was pretty handy with a hammer and saw and decided to design and build a swing set, complete with a play house, up high on stilts, a fireman’s pole, a slide, monkey bars and trapeze. I wept as I built it thinking he may never have a chance use it, but he did, he really did!! He could hardly hang on to the swing when he first tried it, but within a year he was able to hang with one arm for many minutes. He climbed the fireman’s pole like a ape and would speed down the slide in one blurry motion. Incidently, when he was seven, he broke his nose when he fell on his face showing off to his friends.

Addison was in his fourth year and we were thinking about pre-school soon. His energy was very limited and he seemed to be going downhill fast. He had trouble exerting himself in even the slightest way and we found out why with his next visit to the hospital. Tests showed that blood was not flowing through a certain opening because of a build-up of scar tissue. The opening made by Dr. Hakimi had to be opened wider to slow down a venturi effect of the rushing blood. This operation was not a planned one but it saved Addy’s life. Afterward, he could run out to the mailbox and come back without having to stop.

Our family cannot say enough about the care, skill and support of the dedicated, devoted staff at Childrens’ Hospital. Had it not been for them, there would not be an Addison Thomas Ward. Our heros are: Dr. Hakimi (retired), Dr. Walters and Addy’s cardiologist and friend, Dr. Robt. Ross, as he is always there for us.

Addy’s first surgery was a little over 13 years ago and since that time, he has been a thriving boy in every sense of the word...Dr. Hakimi’s miracle; my inspiration; my little boy; my special son:………Addison Thomas Ward.

~ Terry, Proud Father of Addison

Andrew

While in the womb, Andrew Locano was carrying a secret. At 20 weeks, his secret was out. As determined by ultrasound and confirmed by echocardiogram, Andrew had Hypoplastic Left Heart Syndrome. His parents were given options to terminate, place Andrew up for special care adoption, or surgical intervention by a specialized team of doctors at the University of Michigan. For the Locano's, there was only one option. Surgery. They were also informed about the Hearts of Hope organization and given contact in formation of children and parents who had already experienced what was ahead for Andrew. Fearful of what she might hear, Sheila, Andrew's mom,avoided making contact with these parents. Andrew was scheduled for delivery by c-section at the University of Michigan on April 12, 2005.

Moments after his arrival he was taken to the NICU where he spent his first three days, only being held for short durations by his mom. At 70 hours old, Andrew underwent the first of three expected surgeries. The surgery was successful. Upon arriving home, nervous and concerned, Sheila took advantage of the names and numbers given to herand made the first of many calls to follow, only wishing she had done so sooner.

Four months later,Andrew under went his second successful surgery. Andrew is now 15 months old and has been as rambunctious as ever. He has developed right on schedule and is even talking more at this age than his big sister Emily did. In fact, she can barely keep up with Andrew. Sure, he has had his fair share of bumps in the road, but comes through them with flying colors. Andrew will undergo his third surgery sometime in the next six to eight months. Although this will be a trying time for the Locano's, they are very thankful for the support of the Hearts of Hope organization.

--Chuck and Sheila (Andrew's parents), and big sister Emily

Annika

We first learned of our baby's heart defect at our 18 week ultrasound. Since we already had a healthy 2 year old boy, we were completely unprepared for the news at the ultrasound that our baby's heart was 'very enlarged' due to a severe heart defect that was causing the heart to work much harder than it should have to. The diagnosis was Ebstein's Anomaly, a rare heart defect in which the tricuspid valve on the right side of the heart is misplaced and (in our case) malfunctioning and the right ventricle is underdeveloped. This type of defect can range in severity and sometimes does not even require surgery. We were told by the doctors that it appeared that our case was very severe and would require the 3 staged Fontan procedure.

Through the remainder of the pregnancy we continued to get ultrasounds every few weeks in order to monitor the baby's heart. At around 27 weeks, the fluid around her heart began to build up indicating she was showing signs of 'heart failure.' Around this time, I also began showing some symptoms such as extreme fluid retention in my ankles. The doctors diagnosed my condition as 'mirror syndrome' which is another rare condition in which the baby's heart symptoms begin to be reflected in the mother.

Because this condition can be dangerous for the baby and mother, and the fact that the baby's heart condition was worsening, the doctors felt that the only choice for us was to deliver the baby early so that they could begin medical intervention. Annika Elizabeth came into the world on November 17, 2006. She had tremendous odds against her due to the severity of her defect along with being born 11 weeks early.

We were blessed to have our baby girl with us for 12 short days. On November 29th, 2006 the doctors informed us that her body was beginning to shut down and she was in multiple organ failure. We had no choice but to remove her from the ventilator. Annika's short life on earth has enriched our lives in ways we couldn't have previously imagined. Although we wish she were here with us now, we are comforted to know that she is a better place in heaven, and free from any pain.

Diagnosis:

Ebstein's Anomaly

Parents:

Jason and Hannah, big brother Andrew

Charlie

On November 30th 2006, our beautiful baby boy Charlie was born into this world, and on December 4th, he left to become an angel.

At our 18 week ultrasound we found out that Charlie was going to be born with a heart defect called Transposition of the Great Arteries (TGA). To prepare for Charlie, we met with many doctors and other specialists to come up with a game plan to ensure a smooth delivery. We knew before Charlie's birth that I'd be delivering at Hutzel Women's Hospital in downtown Detroit so that Charlie could be transferred soon after to Children's Hospital of Michigan via tunnel. On Tuesday, November 28th, my water broke unexpectedly. Corey and I were both worried because I was only 34 weeks and 5 days pregnant. We thought it was too soon for Charlie to be here, and were terrified of the consequences of an early delivery. We went to the hospital where they told us that my water had indeed broken, and that they'd move me into a room and call my doctor. After a 15 hour waiting period, they decided it would be best to induce me. After 28 hours of labor I didn't progress enough to deliver naturally so a cesarean section was done. When Charlie was born they hurried him past me so I could see him as they were getting ready to transport him to nearby Children's hospital. Our Charlie was rushed to the NICU because when he stopped crying, he would stop breathing. They diagnosed Charlie with severe Respiratory Distress Syndrome and told us his lungs were not mature enough. By the time he was born, he was 35 weeks old and at that point the doctor thought his lungs may have been mature enough. Unfortunately this was not the case. Because of his immature lungs, his heart defect, and the severity of his condition, they couldn't take him via tunnel to Children's Hospital. They needed to get him to Children's very quickly, so they took him by ambulance. After manually helping Charlie to breathe for 6 hours, they finally got him on a oscillatory ventilator, and got him settled into the NICU at Children's.

As I laid in the recovery room at one hospital, Charlie fought for his life at another one. When I was finally moved to my post-partum room, Corey called from Children's NICU and told me that Charlie was in dire straits and that they needed me to come see him immediately. I wasn't made aware before this that there were any issues with Charlie after birth and it was at this point where I found out that his situation was very critical. My mom went and told the nurses that I needed to be taken via tunnel to Children's to see my son. They said "no" because I still had the epidural in and they needed my doctors approval. They said that I could see him tomorrow.

My mom proceeded to the nurses station and told them I needed to go NOW because Charlie may not have a "tomorrow". After hearing that, the nurses and my mother came in immediately and hoisted me into a wheelchair, and took me to see him.

When I saw him, he was situated amongst many machines and monitors. His skin had a bluish tint, despite being on a ventilator. The chaplain was there and both my husband and our families were praying. (they bent the 2 people per bedside rule that night so everyone could see him) Charlie was baptized just in case the worst happened.

The praying and the baptism seemed to work, because Charlie improved significantly. Over the next few days, Charlie was placed on a regular ventilator, and slowly being weaned off it (although not completely). He had a balloon septostomy/heart catheter procedure done on December 1st to open up a hole in his heart to allow his heart to function better until he was well enough for surgery. The risks for this procedure were heart attack and stroke, although the chances of either of those happening are so tiny that the benefits outweigh the risks. We found out through this heart catheter procedure that Charlie also had Coarctation of the Aorta (COA). They said they would be able fix it during his arterial switch operation, which would have to wait until he was better. On December 2nd and 3rd, Charlie continued to improve and we continued bonding with our beautiful baby boy. On December 2nd, we had very few visitors. We took that time to spend with Charlie without the pressures of entertaining others. It was during that time we learned that Charlie had ticklish toes, and that when he heard us talk he would respond to our voices by adjusting his breathing patterns. On December 3rd, we got to hold Charlie for the first, and sadly the last time while he was here on earth. The nurse felt comfortable enough to let us hold our Charlie despite being attached to the machines and monitors. I sang to him, and rocked him. Corey and I took lots of pictures. Both my family, and Corey's family came from out of town to spend the day with Charlie. We were all so proud of the progress he was making, so much so that they were going to talk about scheduling him for surgery the next day.

That night, as Corey and I were leaving for the night we felt safe knowing Charlie was being well cared for. We only were going 100 feet to the Ronald McDonald house next door. We kissed Charlie goodnight, talked to his nurse for a bit, and then kissed him again and left. We went to the Ronald McDonald house to try to get some rest.

Exhausted, we reluctantly fell into an uneasy sleep, but only for a little while. Only a few hours later, at 1:42 a.m. on December 4th Corey received an alarming phone call from one of the nurses at the NICU. She said to come quickly because Charlie's heart had stopped. She had informed us that they had gotten his heart started again, but to come quickly.

We raced to the NICU, only to find many doctors, nurses, and other medical professionals surrounding our son. They looked hopeless. They weren't sure why his heart was failing. They tried for over an hour to help Charlie find a regular heartbeat, but it was to no avail. At 2:54 a.m. on December 4th, our Charlie became an ANGEL.

CJ

CJ's story began at our 18 month ultrasound. We found out right away that our first baby was a boy! The technician continued, telling us her findings and measurements and then she came to his heart…

It seemed like eternity before the doctor came in our room. My stomach was in knots because we knew something was wrong. That feeling was validated an hour later when the doctor told us our baby could possibly have Transposition of the Great Vessels. He said the two great vessels were not crossed but instead parallel. That meant oxygen was not flowing to the rest of the baby’s body. He was surviving off of my oxygen now but would need intervention when born. The doctor told us to come back the next day for an echocardiogram. My husband and I were a mess as we were full of worry, hope, sadness etc. The echo lasted a good hour because the baby’s heart was so small, about the size of a thumbnail. He confirmed the diagnosis and recommended an amniocentesis to rule out chromosomal abnormalities. We took his advice because we are planners. We knew we’d have the baby regardless of what we found out, but wanted to know ahead of time to research and plan for our baby’s care. After a long two weeks of waiting, we received good news that most likely, this was an isolated defect. We met with the pediatric cardiologist, my OB and the fetal ultrasound cardiologist to plan the next step. They told us about Dr. Bove at University of Michigan so we made an appointment with him to have a consultation and did research on the web. We read many success stories about other children who had done the “switch” procedure vs. other procedures. The “switch” is where a surgeon disconnects the great vessels, crosses them and reconnects them to the correct chambers. It is unbelievable what they can do for these babies! We were reassured that Dr. Bove would be in town the week of our due date to do the procedure. We were also given a name of a family who lived nearby that had just gone through this same experience with their child. Their son successfully completed his surgery and was doing well. We met them and they were an asset to us with all their information and support. I had many ultrasounds and fetal echocardiograms throughout the pregnancy. At my 37 week ultrasound, we were told there was no more fluid in the amniotic sac. We had to have them repeat that to us a few times before it sank in! We were sent to my OB who, in turn, said “Get to the hospital now. You have to be induced. There is no more fluid for the baby.” I had been busy teaching Kindergarten up until the week before so we had nothing packed, nothing washed – (I know, I know, we had at least three weeks left!)

So we drove to the University of Michigan, numb to what was going on. You have so many mixed emotions because there are several unknowns. It was midnight and I hadn’t eaten, was stuffy from a bad cold, and the next thing I know I’m hooked up to IV’s. They gave me a medication called Pitocin and said it would be 12 hours to induce the delivery. They also gave me some food and cold medicine, which I thought was nice. A couple hours later, I was having major contractions. Once the epidural kicked in, I couldn’t feel anything. I fell into a deep sleep. My husband went down to get breakfast. I woke up to people charging into my room demanding answers to questions, asking “Don’t you feel those contractions? Can you feel anything? Do you need to push?” I honestly felt nothing! I was completely numb from the waist down. They put an oxygen mask on me and I heard someone say “We’ve lost the heartbeat, get her down to the delivery room now!” My husband came back from breakfast, with worry all over his face when he saw the commotion going on. I remember them running me down to the delivery room and telling me to push. I still couldn’t feel anything except my husband’s hand in mine, which was so reassuring. There were about 15 people in the room. All were telling me to push even though I still couldn’t feel a thing, but after the fourth push, less than a half an hour later, I heard the most beautiful cry. They even lifted me up so I could see our beautiful baby – he was so alert and kept looking around at everyone. I waved to him as they took him away. I did not get to hold baby Christopher until the day of his surgery, which was six days later. My husband did not get to hold him until 2 weeks later, 1 week post surgery.

The days following the delivery were the hardest. There is no time to rest because you are so worried about your baby and focused on saving his life. Your body will need time to heal from delivery. My recommendation is to get a wheelchair when you are at the hospital. The first few days, I walked everywhere and landed back in the maternity ward with sharp stomach pains. I took their advice and used the wheelchair for a good week after that. It is hard to see your baby intubated and on the ventilator. CJ did well the first two days but was intubated on the third day. He stayed in the NICU the days before his surgery. The nurses were wonderful there. The day of CJ’s surgery, when they wheeled him away, was probably the hardest day of our life. To watch your child leave with the knowledge that this could be the last time you see him, is the hardest thing to go through. Then the waiting came. We went up to the waiting area and after 3 hours, we were told everything was going great and that the surgery was successful! My husband and I were absolutely relieved. They said it would be another hour and a half and we’d see him. Well, an hour and a half went by. Then two hours. Then three. By the third hour we were a mess. We called to get an update and it turned out there had been a problem with CJ’s respiration. Things were not looking as good as they thought. That day of the surgery was the longest day of our life. I don’t remember how long it took after that, but eventually he came through and they brought him up to the Pediatric Intensive Care Unit. I was not prepared for what I saw next. I don’t think you can be prepared when you see your child hooked up to so many tubes and machines. He was swollen from the surgery so he didn’t look like himself at all. The next several days are a blur. I stayed by his side as much as possible but would sneak away for a nap or to the pumping rooms. He did really well and was moved to moderate care after a week. In moderate care I was able to hold him again which was absolutely wonderful! We also tried feeding him breast milk in a bottle intermittently to work on his feeding strength. Again, I tried to stay by his side as much as possible. After about three days, CJ was moved to the floor. He was there for a few days. I remember praying over him, and being so thankful for each day. He was gaining strength but still sleeping most of the time. He was such a trooper when the nurses would come in to check on him. He rarely cried, and was such a calm baby. I still remember the beeping sounds, with eyes alert to the monitors. When CJ was on the floor, my husband and I took turns sleeping in the room. The day he was ready to go home, a lactation consultant came in and gave me a “lesson” on breast feeding. Three weeks after he was born, CJ surprised both of us and latched on right away- a natural. The consultant gave me a lot of encouragement and felt he would be just fine. So they took his feeding tube out! The pressure was on! I remember feeling so scared that I was the sole nutrition. It took a lot of patience and dedication but CJ did nurse for the next year. He was very weak in the beginning and would nurse for 5 minutes at a time for the first few months. I continued to call the lactation consultants from Mott Hospital because they were the most supportive. A lactation consultant from my OB’s office, in fact, told me to stop nursing. So, always go with your gut feeling. You know what is right for your baby, whatever you choose. There is someone out there who will support you. CJ came home from the hospital on his original due date, exactly 3 weeks after he was born. We were so blessed that he recovered as fast as he did. I remember giving him several medications during the first month he was home. Someone gave me good advice to fill all the syringes with the exact doses for the whole day and store them in a cup in the fridge. That helped a lot because we just grabbed the next syringe without trying to calculate.

We owe a big huge thank you to our family and friends for their support during this time. Our pastor even fed and walked our dog while we were in the hospital! My husband’s step mother came and stayed with us the whole time we were in the hospital, doing laundry, and getting food. Without her being there, we probably wouldn’t have eaten. She stayed with us three weeks after we got home (a total of 6 weeks!) and I will be eternally grateful to her for that. I also met a good friend while we were there who happened to live in my neighborhood. So there were blessings that came from this extremely difficult ordeal.

Wow- it’s hard to believe that CJ is now three and a half years old. He is almost four now and doing fantastic. He is such a blessing. Anyone who goes through a similar situation with their newborn knows that feeling. We are grateful for each day with CJ. He is our miracle in so many ways. He has hit all milestones without delays except for his speech. He has had a mild speech delay and has received therapy for it. He also has had a mild food aversion and is receiving food therapy. His speech therapist is trained in this and has changed his view of eating. Other than that, he is a healthy, thriving, happy boy that lights up our world. We had a second baby boy 18 months after CJ’s birth and the two of them are close friends.

We wish the best for you and your family and hope our story has helped give you information you need and hope as well.

Kiley

Kiley was born February 2, 2010 along with her twin sister Haley to Season and Korey Willi. The girls were 6 weeks early but perfect. Kiley had a heart murmur but the doctors said it should go away on its own.

When Kiley was 6 days old, they did an ultrasound because her murmur was still do pronounced. They discovered that she has Tetralogy of Fallot, Pulmonary Atresia, and Brochopulmonary Collateral Vessels.

Today, at 16 months old, she has had 3 open heart surgeries and multiple heart catheterizations. She also has a feeding tube and is tube fed due to an oral aversion. She receives PT/OT for feeding and mobility due to a delay in phyiscal mobility and the oral aversion. She has multiple heart surgeries in her future, but she is the happiest baby and always puts a smile on your face, despite all that she has gone through already.

Paige

Paige, was born Sept. 9, 1997 to Ron & Stephanie Patalon, first time parents. We were told during pregnancy & after delivery that she "is perfect." After being home for 4 days Paige needed to be seen to check her bilirubin level at the pediatrician’s office. During that Saturday morning appt. Paige began to turn blue & the Dr. heard a heart murmur.

We rushed Paige to the hospital & while she received emergency treatment. We were told that our “perfect” daughter had a heart defect called Transposition of the Great Arteries. Our lives were forever changed.

Paige has had 2 open heart surgeries @ Children’s Hospital of Michigan at the ages of 9 days old & 51/2 month’s old.

Paige is now, 9 years old (almost), and thriving right along with other children her age. She plays soccer, rides her bike, rollerblades & has so much energy for life. She doesn’t have any activity restrictions and does not take any daily medications. She is on annual check ups.

We have been blessed. And to anyone that reads this may you also be blessed & find hope through reading & seeing how these children thrive & overcome these obstacles. Children are fighters and survivors. God puts it in each of us. We have also had a second child that is almost 6 years old and “heart healthy” overall. He does have a murmur, but it is considered benign and doesn’t need any special monitoring.

While going through this time of our life it didn’t make sense. And some things never will. But I am grateful that God chose us to be the parents to one of his “special” children that he has placed on this earth to teach us & others. The teachings are sometimes learned right away but many others are still to come. I know one thing; I will get all my answers when I meet our glorious father in heaven. As for now we will enjoy our day to day life because it can change in an instant, just as we learned that Saturday morning.

Parents of Paige & Jacob
Ron & Stephanie Patalon

Aidan

Aidan Kristopher was born on August 18, 2004, with an undetected heart defect. He was our first born, a beautiful and what we thought healthy baby boy. Three hours after discharge is when our lives changed forever! Aidan woke up crying hysterically, as a first time mom I tried comforting him, changing his diaper and feeding him. After a few more attempts and nothing calming him, I called my mom. I began telling her that I thought Aidan was allergic to his formula or something for I could hear gurgling. My mom asked,” if that was Aidan breathing?” I said, yes and she yelled, “I’m on my way”. I screamed to my husband who was napping that something was wrong with Aidan! Within minutes Aidan’s coloring became flush and he had red streaks all over his body. As we were walking out the door to take him to the hospital my mom was pulling up and together we took Aidan to the emergency room. After four and a half hours of numerous tests, lab work and pokes they still did not know what was wrong with our baby. The Doctor then called the nearest hospital with a Neonatal Unit and it was that Doctor who diagnosed our sons’ heart defect over the phone and immediately sent his transport team and medicine Aidan needed to stay alive.

Upon arrival at the second hospital we meet with the cardiologist and were told that Aidan had been “REVIVED” during transport, that he was very, very sick and of his heart defect: Hypoplastic Left Heart Syndrome. If he was a candidate he would undergo a series of 3 open heart surgeries before the age of three and or need a heart transplant. We were devastated! Shortly after we were allowed to see Aidan, a sight forever etched in our minds. Our precious baby had so many wires and tubes attached to him, so many lights, monitors, nurses and Doctor’s surrounding him. Our priest came and Baptized Aidan and Anointed him of the Sick and then he was transported to a third hospital. Aidan was transported to Children’s Hospital of Michigan where they were equipped to care for him and his “special” heart. After a week and a half of uncertainty things began looking better. Aidan’s test results were coming back positive and he soon became a candidate for the surgery. The 1st surgery, the Norwood was performed on September 1, 2004. Thankfully and Lord willing he was home 2 weeks later. Aidan came home with a feeding tube which he only needed a week also with oxygen which continued until after his second surgery. Aidan remained homebound, only leaving the house for doctor appointments until after the second surgery due to the high risk of infection. Aidan had the 2nd surgery, the Hemi-Fontan done at ten months of age due to some wheezing and congestion. The Hemi-Fontan was performed on June 16, 2005. Again thankfully and Lord willing he was home 6 days later. Aidan no longer needed the extra oxygen! After a 6 week recovery all restrictions were lifted and Aidan was allowed out into the “WORLD”. My husband and I were again blessed in September 2005 with another beautiful this time healthy baby boy, we named Gabriel. Aidan's 3rd and we pray final open heart surgery, the Extra-cardiac Fontan, was performed on June 27, 2006. Thankfully and Lord willing he was home 14 days later. May of 2007, Aidan was not himself and seemed as if he was sick. We took him to his pediatrican's where he had a fever of almost 105.0 and oxygen levels in the 50s. He was immediately transported to Children's Hospital by ambulance and after a long and extensive heart work up, we found out that his fenestration (the hole his surgeon had made) did not close fully on its own. June of 2007 Aidan underwent a very invasive heart cautherization to close that fenestration. Again thanfully and Lord willing he was home the next afternoon.

Summer of 2007 was a time of many 1sts for our family. It was many months full of fun, busy and active days, weeks and months. We went to parks, had picnics, went to the zoo, parade, watched fire works, caught lightning bugs, swam, went for walks and wagon rides, ate lots of ice cream and even went on a family vacation!

Aidan is a thriving, fun, energetic 4 year old. He loves life and everyone around him. He has the biggest, brightest brown eyes and a smile that will light up any room. Through Aidan’s eyes and heart we have learned how precious life is; we’ve learned to love more, give more, to be more patient and we're definitely more faithful. We live one day at a time and do NOT take anything for granted. Simply put, we have all become better people! Although we would never wish this journey on anyone we do NOT regret the lessons instilled within us.

First and foremost thank you God for giving us these gifts. Many thanks to our family; friends, co-workers and to all the heart families who have shown us so much love and support. We love you all and appreciate all you do for us. To all the wonderful Doctors, Specialists, Nurses and Staff who care for Aidan………………….Thank you. We hold each of you in our hearts for you’re such a part of our family and our lives. Thank you for taking such great care of Aidan with your love, care, concern and most importantly your knowledge and wisdom.

I invite everyone to visit Aidan’s care page at http://www.carepages.com/
care page name is aidan_laforest

~Kristopher & Jamie, Proud parents of Aidan
~Gabriel, little brother to Aidan
email address jamie.laforest@wyan.org

Alasen

Alasen was born on May 24, 2005 at the University of Michigan Hospital. Prior to her arrival, during my 18 week ultrasound, we were told that Alasen had a very serious Congenital Heart Defect- Pulmonary Atresia/Hypo Plastic Right Heart Syndrome. There are two options for children with this type of defect… a heart transplant or a series of open-heart surgeries that reconfigure the circulatory system to bypass the non-working side of the heart. After much research, we chose Dr. Bove to perform the surgeries.

Alasen’s first heart surgery, the Norwood, took place when she was 2 days old. After two weeks, we were able to bring her home on a feeding tube. She needed 30 doses of meds per day! Doses and feedings needed to be administered around the clock. And since Alasen would sleep through the night, we got used to setting our alarm clock for four hour intervals.

Alasen’s second heart surgery, the Hemi-Fontan, was completed when she was 6 months old. During this hospital stay, we were also informed that she had plagiocephaly and torticollis (severe flat spot on her head and a prominent neck tilt). After she stabilized from her heart surgery, she was fitted with an orthopedic helmet and began physical therapy for the neck. Six month proved successful for the plagiocephaly, but not the torticollis. It was then recommended that Alasen see an ophthalmologist to see if a “floating” eye could be part of the problem. After three eye surgeries, over two years, the eye was corrected which also produced the desired effect on her head tilt.

At 15 months, Alasen suffered a stroke. The stroke affected the right side of her body, including the ability to sit, stand, walk, hold items, and talk. After two weeks of around-the-clock therapy at U of M, we were discharged. I went to a part-time schedule at work, and took Alasen to physical, occupational, and speech therapy four days per week. Alasen was also put on Heprin injections (blood thinner), which I administered twice a day.

At 18 months, Alasen was suffering from multiple attacks of Croup. There were many scary moments where she was admitted to the hospital for oxygen and breathing treatments. One of the attacks took the form of pneumonia. So, in entered another machine into our home… a nebulizer for breathing treatments. After more investigating, it was determined that Alasen had a narrow airway and that she may need to have a traechostomy. This was devastating to us, since she was just beginning to speak a little bit since the stroke. However, once they began the surgery, doctors realized that her airway was compromised by cysts. Once removed, most of the breathing issues subsided.

Three days before Alasen’s 2nd birthday, she underwent the last of the three heart surgeries- the Fontan. Since then, life has become less eventful. Alasen still attends physical, occupational, and speech therapy, but only once a week. Heprin injections have been replaced by oral Coumadin, and I am able to take her blood draws at home vs. the lab. Thanks to the Lord, Alasen is able to walk, skip, and run. She does need to wear braces on both of her feet, but the pink butterfly decals make it easier! She is now left handed, but can use her right hand for support activities. Speech has been slow, but she has finally started to use a full vocabulary… even if it is a bit difficult to understand.

In April 2009, she was granted a Rainbow Play Structure from the Make-A-Wish Foundation, and on any given day you can see her dressed as Cinderella swinging with all her might. Despite all of the difficulties she is a happy little girl who loves playing with babies and her doll house. All of the challenges we have endured and will possibly need to endure in the future are well worth the life that she lives and the lives that she touches. To God be the Glory!

Julie Osborne- Mom

Alex

Alex was born on New Year's Day, a very beautiful baby boy. At less than one day old he was diagnosed with tetralogy of Fallot, pulmonary atresia, and an ASD. Our lives were forever changed. He was transferred to the University of Michigan and had his first open heart surgery at 8 days old. There were a few bumps along the road, but after four weeks our baby came home. We were so happy and excited to have our family home together, having an older child as well. We were also scared - he was still was on oxygen, tube feedings, continuous monitoring, and a never-ending medication schedule.

Only one week after coming home, Alex started having more trouble breathing and we had to take him back to the hospital. They found that his left pulmonary artery was totally closed. The following morning, on Valentine's Day, Alex had his second open heart surgery. His recovery was slow, and ended up needing yet another surgery to repair his diaphragm. After another 5 weeks we were able to bring our baby home again, still on oxygen and tube feedings.

Alex continued to have problems with his pulmonary arteries, particularly the left. It wasn't long before we met Dr. Lock at Children's Hospital Boston, whose specialty is dilating pulmonary arteries. Dr. Lock has performed four caths on Alex with extensive dilations and also placed two stents. The right side is greatly improved - which allowed him to come off of oxygen at eight months old. The left side still has very minimal flow, and he functions quite well off of one lung.

At 18 months old, Alex had his third open heart surgery. This was to replace his conduit (pulmonary valve) and partially close his ASD. Thankfully this surgery went smoothly and he came home within two weeks. Unfortunately, the conduit does not grow with him - so he will need future open heart surgeries to replace this as he gets bigger. This is the part that was probably the hardest for us - that our son faces a lifetime of surgeries - that the Drs can't just "fix" him. It's a good thing that God made Alex so brave and strong.

Alex is now 3 ½ years old, and is truly an amazing little boy with his own personality. He loves gymnastics, playing baseball, riding his bike, and especially hanging out with his big brother Noah (7). To see him smile, to hear him laugh and sing, to watch him pedal his bike oh so fast; we're so very blessed - and thank God for each and every day.

- Rob & Heather, Alex's Parents (Northwest Ohio)

Stefan

Stefan was born August 12th, 2008. His pediatrician detected a heart murmur when he was a day old. We were not too worried about it as it is fairly common in babies. However, at his one week check up the murmur was still very evident. He was referred to a pediatric cardiologist who conducted an echo and discovered that Stefan has critical/severe pulmonary stenosis (narrowing of the pulmonary valve and right ventricle hypertrophy/build up of the heart muscle from being overworked.) We went directly to Children's Hospital of Michigan for a cardiac catheter ballooning procedure to open the up the valve.

Unfortunately, Stefan did not see improvement from this procedure and suffered a stroke in two locations of his brain as a result. MRI additionally showed that he had a brain bleed at the base of his brain. Due to this the heart surgery that he needed to repair the valve would have to wait until the bleed absorbed, as blood thinners needed for surgery would of caused great damage. Stefan’s heart was pumping in the opposite direction, so anything such as an air bubble or in Stefan’s case a tiny piece of his tricuspid valve that was dangling post cath could break off and shoot up into his brain causing additional stroke concern. We were looked at by 15 doctors rounding and told to, “Pray very hard for Stefan”. Thank God Stefan pulled though and was well enough to return home. Several months later Stefan was cleared for surgery. Dr. Bove at the University of Michigan performed the surgery when Stefan was 3 moths old. He had ups and downs during his post op stay at U of M - coding the day after surgery, multiple drainages tubes, in and out, etc…but then he hit a stride and kept on improving. Thank God!

Stefan’s surgery completed –

  • Pulmonary Valvotomy – Open-heart procedure to open the pulmonary valve. The valve is surgically opened-up by dividing its leaflets.
  • Transanular Patch – Patch to open the valve leaflets which relieved the right ventricle pressure immediately.
  • Ligation of PDA (patent ductus arteriosus) – Before birth, there is a natural blood vessel between the aorta and the pulmonary artery. This opening usually closes shortly after birth. A PDA ligation occurs when this opening fails to close.
  • Closer of PFO (patent foramen ovale) – The foramen ovale is a small hole located in the atrial septum that is used during fetal circulation to speed up the travel of blood. Normally the PFO closes at birth when increased blood pressure on the left side of the heart forces the opening to close. But because of Stefan’s right ventricle pressures so high it did not close. If the pressure is great enough, blood may travel from the right atrium to the left atrium (opposite of ‘normal people’ like in Stefan’s case). If there is a clot or particles in the blood traveling in the right side of the heart, it can cross the PFO and travel out of the heart and to the brain (causing a stroke) -----which occurred with Stefan.

Stefan will be able to have ‘normal’ activity throughout his life. He will be monitored by yearly cardiology appointments and another open-heart surgery will be needed in the future to replace the pulmonary valve due to valve leakage. We are hopeful this will not happen until his teenage years or beyond. And by then it is our hope that they will have advanced catheter procedures to be able to perform a valvectomy via catheter. He also seems to be right on track with his cardiology follow up and developmentally (he will continue to follow up to assess stroke damage, if any though out his development). We feel truly blessed to have Stefan in our lives.

Carepage: http://www.carepages.com/carepages/stefan

Andrew

May 2003-The phone rings and it’s the doctor with the results of my blood work. “Mrs. Gilbert all the tests were negative except the pregnancy one—that was positive!” Did someone just pull the rug out from under my feet? 3 months later—the doctor’s words “I’m going to send you to the hospital for a fetal echocardiogram. We can’t tell if there is blood flowing between 2 of the chambers in his heart. Don’t worry, I send about a dozen women a year for this test and haven’t had anything come of it.” Aug. 14, 2003—the day of the big black out and a day we will never forget! The pediatric cardiologist words, “There is something wrong with your baby’s heart and it is very serious” OK, now someone has pulled the rug out from under our feet!! We were told there were 3 options for our son with his hypoplastic left heart----do nothing and he will die, perform 3 open heart surgeries and see how he does, or a heart transplant. We didn’t like any of these options and just began to pray and had tons of others praying with us.

At 32 weeks of pregnancy, I had another fetal echo done and reality began to sink—our precious baby was going to have a tough road ahead of him! Nov. 19, 2003 Andrew was born and our family started a path that has changed each one of us. Andrew was a whopping 8 lbs 15 oz. He was immediately given medicine to help keep open the part of his heart that allowed his blood to circulate to his body while he was in the womb. He was 4 hours old when a transport team from Childrens Hospital came and took him to the NICU. We were not sure what to expect and the next day anxiously made our way to Childrens. Andrew was the biggest baby in the NICU and was doing well. After getting some levels in his body under control he was scheduled for his first surgery—Norwood procedure—Nov. 26, 03. At 1 week old he made it through the 9 hour surgery. We got to see him on his way to the PICU for just a moment. He was swollen and hooked up to so many tubes and monitors. The next day was Thanksgiving and we sure were thankful that he was still with us!! The hospital called the next day when I was at home—Andrew had crashed and they had to revive him but he was stable now. Slowly as the days passed tubes and IV’s began to come out. The hardest part was not being able to hold him. At one point my husband told the doctors that we were not leaving that day until I had held Andrew. He needed a feeding tube, so I learned how to put one in and take it out. Finally one day short of his being 1 month, he came home! It was the best Christmas gift! He was on 6 different medicines and in the weeks to come would also be diagnosed with reflux. That came after he refluxed, aspirated and stopped breathing and in turn was admitted to the hospital.

The next few months were spent going to doctors appointments and getting to know our baby. He was not the happiest baby and if he cried to long he would turn purple. When he was 4 months old, he cried all night and we knew something was wrong. We had a cardiologist visit the next morning and they admitted him to the hospital to start IV lasix—he was retaining fluid and starting congestive heart failure—time for the second surgery. 2 weeks later April 16, 2004, Andrew had his Hemi-Fontan. The surgery wasn’t as long and Andrew did well. He was still having feeding issues and got so constipated post-op that when he finally went, he tore his rectum. Changed his formula and 10 days later he left the hospital. Andrew was like a whole new baby—he started eating and wouldn’t stop—the feeding tube came out the day he came home and never went back in!! His reflux was under control and new formula seemed to be helping. He quickly came off medicines and our trips to the hospital got farther apart. We celebrated Andrew’s first birthday with Dr. Forbes telling us not to bring him back for 6 months! Andrew began physical therapy to help him catch up. He was about 5 months behind others but began to catch up quickly.

Feb. 14, 2006---Andrew had his Fontan completion and was only in the hospital 6 days! He healed quickly and didn’t miss a beat. Physically he is caught up and no longer needs therapy and at his check-up in June, Dr. Forbes said those words we love to hear---see you in 6 months! Andrew is a rough and tumble 2 ½ year old—people look at him and say you would never know he has a health problem. I will never forget the day when he was 9 months old and I was in a ladies room changing his diaper, a perfect stranger said, “What a healthy looking baby!”. I stood there with tears in my eyes and said “Thank you”. We call Andrew our “little miracle man” and thank God each day for blessing us with a happy, strong hearted boy!!

--Laura, Dale (Andrew's parents), big Sister Allison, and big brother Austin

Angelina

Our journey with congenital heart defects began on January 28, 2004, when an ultrasound indicated our daughter had an enlarged left ventricle. We were referred to the hospital for a fetal echocardiogram within a few days and received the diagnosis of severe critical aortic stenosis with fibroelastosis secondary to the stenosis. We scheduled a prenatal echocardiogram with Dr. Carlen Gomez at the University of Michigan’s Congenital Heart Center in Ann Arbor. She gave us the option of trying an experimental procedure in Boston to open our daughter’s valve while still in the womb in hopes of preventing HLHS. Angelina’s dilated left ventricle was not contracting well and had much scar tissue due to the pressure from the very narrow valve with very little blood flow. The aortic valve was successfully ballooned at the end of February in Boston at just 23 weeks gestation. We were the 19th ones to have the procedure done in Boston. We were hopeful at first that she would not develop HLHS; however, despite better blood flow, her left ventricle did not respond as we had hoped.

After birth, Angelina developed sepsis (a blood infection thought to be due to a line infection) and her surgery was delayed until she was 18 days old. She had some trouble after the Norwood initially with lower saturation levels, water retention, a partially collapsed lung, and difficulty remaining extubated due to mucus. Angelina came full circle and started having saturation levels in the 90s. She was beginning to eat from a bottle. When we had everything ready to go home the next day, Angelina developed a mysterious stridor(whistling sound when she breathed) and chest retractions. She had many signs of congestive heart failure. Trachea or vocal cord conditions had to be ruled out by the ENT department as well. There were theories of the shunt being too large from her Norwood, possible aspiration while feeding, and/or a combination of factors. Angelina ultimately ended up being placed on the ventilator again, in the intensive care for a couple of days, and then was fine when she extubated! She was discharged at 2 months old. She stayed home until her hemi-Fontan surgery at 5 ½ months old.

We have been fortunate that Angelina has been relatively healthy. She was in for one week recovering from her hemi-Fontan surgery with only one scare involving a partially collapsed lung and mucus once again. She is walking, talking, and acting like other children her age. Her favorite sayings to her 4 ½ year old brother, Nickolas, are “No, mine,” and “My show.” It is truly amazing how far she has come! Angelina has brought great joy to our home, allowing us to not take for granted the little things in life. We anticipate her cath on May 22, 2006 and her Fontan on June 26, 2006 after we celebrate her second birthday.

2007 update

Angelina had her Fontan on June 26, 2006. The surgery itself went well but she experienced some complications afterwards including a collapsed lung, blood pressure dropping, and desaturations. One of the doctors discovered her endotracheal tube was down a bit two low. After it was adjusted, her numbers got better and she no longer needed support medication for her blood pressure. She did have to stay on the ventilator and be treated with steroids due to her lung, but she was discharged on day 11. She lost some weight at the hospital but after about 3 months, she began eating and doing much better overall. She is an energetic and smart little girl who is always trying to be like her older brother. We are blessed to have her in our lives.

-Brian, Theresa, (Angelina's parents), and Big Brother Nickolas

Brian

On August 30th, 1991, I was two weeks past my delivery date, so an ultrasound was scheduled. Being a nurse, I knew something was wrong when the tech stated, "I'll be right back, I have to get the doctor." I was told that there was something wrong with my baby's heart.

That night I went into labor and our journey began. We met the wonderful Dr. Hakimi at Children's Hospital, and he explained that Brian had three heart defects (Coarctation of Aorta; Transposition; and Hypoplastic Right Ventricle) and would require four heart surgeries. His first surgery was at about five days old; performed through his back. A carotid artery in the neck was used to repair his aortic arch. The surgery went well.
Next, we had to see if Brian could gain some weight and take him home; if not, the next surgery would have to be soon. We knew Brian was facing three open-heart surgeries, and we had to decide if this was the best option for Brian. So, we prayed for God's guidance. "What should we do, Lord? We know that if he dies he will be with you, but of course we want to keep him here." The next couple of weeks was a roller coaster. He would gain weight one day, then loose it the next. He was being tube fed, but his heart was working so hard, it looked like he wasn't going to keep the weight on.

It was now the middle of September, and Brian's dad had a dream. He dreamt that he went to see Brian but he wasn't there. He thought he had died, but looked up and saw Jesus holding him. All of his medical equipment was gone. Brian was looking into the eyes of Jesus, smiling. Jesus spoke, and said, "Brian will be o.k., he will come home on October the 15th." We decided this was our answer.

Brian's first open heart was performed at the end of September, and, yes, he was discharged on October the 15th. A month later, at his first check up, the cardiologist stated "this surgery couldn't have went any better unless God himself performed it." We knew exactly what he meant. Brian's final surgeries were performed at one and three years of age.
I would be lying to you if I told you that Brian has not had challenges. He is now 16 years old and has moderate hypertension. Like most cardiac patients, he is unable to play contact sports. His motor and cognitive skills have been delayed. He definitely has his challenges. But, for the most part, he is a happy healthy young man.
My final thought to whoever is reading this is: If you have a child born with a congenital heart defect, your life is changed forever. Brian's dad and I are both nurses; and even so, it has been challenging. Don't get me wrong, I wouldn't change our decision because I believe it was God's will for Brian to live. But if you're reading this, and you decided to let your child "go" or your child died from complications of surgery, I pray that God will give you peace over your loss or your decision. As stated in Ecclesiastes, "There is a time for everything, and a season for every activity under heaven."

God bless you all,
Kathy (Brian's Mom)

Christian

We were excited and blessed to be expecting our first child. I had a very normal and healthy pregnancy with scheduled ultrasounds and prenatal care. On Thursday, November 16, 2000 at 1:35pm our son Christian was born via c-section. He was absolutely beautiful and our hearts were immediately filled with love, joy and thanksgiving for God’s gift of our baby boy.

On Saturday, November 18th, two days after Christian’s birth our world was about to change forever. We were waiting for family and friends to visit and I was nursing Christian and ‘something’ just didn’t seem right. He had nursed well the past few days but today he was tiring and seemed to be gasping for breath. As a first time Mommy I tried to be patient and thought perhaps he wasn’t hungry. I then said to my husband Wayne, “Something is wrong, and I am calling the nurse”.

That phone call would forever change our lives…the nurse came down and immediately took Christian and ran down the hall as fast as she could. Wayne and I followed the nurse not knowing what was wrong. Questions were asked of us; could it be Strep B? What was our family history? For every question asked; another one would follow. We were now in the neonatal area and the doctor was working very aggressively on Christian. He repeated over and over again, “You have a very, very, very, very sick baby”. Those words will forever be engraved in our minds.

Nurse Pat took us back to our room as we waited for some answers. We were told to call our family immediately. Another nurse came into our room and asked if we would like Christian baptized, to which we said yes. We knew right then that our precious son was very sick. Soon the Chaplain from the hospital came into our room and began praying with us. His prayers were prayers of great sorrow. I remember Wayne & I clinging to one another in disbelief.

We were told they were transferring Christian to the nearest hospital which was Children’s Hospital of Michigan. We kissed our precious son good-bye as the incubator rolled by. Christian was very blue and clinging to life.

(Two years later the transport team told us Christian coded four times during the transport to Children’s Hospital). When he arrived at Children’s, Christian was a very sick little boy. I recall the head nurse of PICU telling us they haven’t had a baby come in this sick in a long time.

We meet with the cardiac surgeons and cardiologist and it was then that we learned that our son had a very severe cardiac defect called Hypoplastic Left Heart Syndrome. We were devastated, what did this mean?

We soon learned of our options and choose the three-stage surgery. First, Christian needed to recover from the trauma to his little body as his organs had shut down. Once recovered, Christian was scheduled for the Norwood, however he then came down with RSV and his surgery was delayed one week. Finally at 20 days old on December 3, 2000 Christian had his first open-heart surgery.

The recovery process began and he did very well, coming off the vent on the first try, nursing from me and taking a bottle. Everyone was amazed that this once very sick little newborn was now doing so well. Christian came home the day after Christmas. What a ‘perfect’ Christmas gift, our son was coming home. How very blessed we felt.

Christian was 6 months old when he had his Hemi-fontan surgery on May 17, 2001. However, after three or four days we had questioned why his saturation were in the low 80’s when going in to the surgery they were around 85. We were told after the surgery his saturations would be in the high 80’s. That’s when the roller coaster ride began again. Five days after his surgery we called in to check on Christian’s condition and were told to get to his room as soon as possible for Christian was taking a turn for the worst. When we got to his room Christian’s saturations were in the 50’s and as they quickly dropped to the 20’s a team of doctors and nurses frantically began working on Christian…we were losing our baby!! Once again they took us away and informed us they had called our heart surgeon that had just performed a heart transplant on another baby earlier that morning.

Upon talking to our cardiologist he informed us that Christian’s stitches in his heart had unraveled and his lungs were completely backing up with blood. Luckily the operating room was prepped from the previous heart transplant surgery a few hours earlier. They told us time was extremely critical and they needed to perform emergency open-heart repair surgery. Christian was on the heart and lung machine in record time. By the grace of God everything went well and Christian recovered from the trauma.

Christian really thrived and did well after surgery and we enjoyed being a family. Christian was 18 months old when Dr. Walters decided to perform his Fontan surgery. Dr. Walters said his surgery was a success and an A+, which was so comforting and reassuring to hear. However, recovery had its own challenges. Christian’s lung collapsed and a chest tube had to be reinserted. Finally after two weeks in the hospital we came home.

Since then Christian has done fantastic. He’s an active and happy 6 year old with a zest for life. He loves trains and playing golf with daddy. Christian is enrolled in an "acting" class and plays sports at Joe Dumar's Sports Camp. He in Kindergarten this year and loves school!

Christian has got the most incredible smile and charming personality and he lights up any room! He puts a smile in the hearts of everyone he meets.

We thank God and the amazing team of doctors and nurses and Children’s Hospital of Michigan for saving our son’s life. We especially thank Dr. Hakimi and Dr. Walters. We can’t forget Dr. Raju at St. Joe’s Hospital in Clinton Twp., who was able to recognize the heart defect that Christian had and was able to provide the appropriate medicine (Prostaglandin) that kept our son alive. We were thankful to know that he had been trained at Children’s Hospital of Michigan.

We feel extremely blessed for the incredible love and support of our family and friends, for the very special bond and life long friendships we have made with our ‘heart families’. Above all, we thank God for blessing us each and every day with Christian. He’s our pride and joy and everyone’s little miracle. We love you so much Christian!!

We invite you to visit Christian's care page at www.carepages.com
care page name is: Christiansheart

Karen & Wayne--proud parents of Christian - Macomb Twp., MI

Colin

Our precious baby boy was born at the University Of Michigan On November 12, 2005. We found out about Colin's heart defect during a 24 week echo after my OB found what he believed to be an irregular heart beat during our routine 20 week ultrasound. Hypoplastic left heart syndrome was the diagnosis. We were told that in most Hypoplastic cases he has diagnosed the families chose to terminate but that was just not a good option for us. We were then advised that compassionate care would be in our best interest. After weeks and weeks of out dated research leading us to believe compassionate care would be best for our baby we found out about Dr. Bove and the Congenital Heart Center at UofM. We had found ourselves some real hope, despite what we were being told. We were desperate and willing to do anything to help our baby so we opted to go with the three-stage surgeries.

Colin had the first of three surgeries, the Norwood at five days old and did extremely well he was able to come home after only two weeks. Colin had his second surgery the Hemi -Fontan at 5 ½ months old and was home after only five days. Colin still continues to do very well. We thank God for the wonderful team of doctors and nurses as well as family, and friends for the support and love everyone has shown us but most of all for this amazing little boy and his strength to survive. He is truly a miracle.

--Jason, Janelle (Colin's parents), and Big Sister Kyla

Devon

Devon was born on December 21, 2005. He is our first child and the first grandchild on my side of the family. We fell in love instantly, he was so cute, even though he had a huge point on his forehead. The doctor's said that the swelling would go down in time.

On the day of our discharge from the hospital, we were told that he had a heart murmur. We made an appointment to see the cardiologist as soon as possible. When the doctor's did the ultrasound we were told that the hole was small to moderate in size and that more than likely it would heal on its own.

At the end of February, two days after Devon 2 month birthday, Steve and I took him to his pediatrician because we thought he had a cold. Devon's pediatrician then sent us to Troy Beaumont for x-rays just to rule out pneumonia. The x-rays came back positive for pneumonia and the doctor then sent us to Royal Oak Beaumont. The next morning Devon was doing better and it looked like they were going to send us home that morning, then the unthinkable happened. Devon started to turn blue and stopped breathing. So many doctors and nurses were the room trying to get him to start beathing again, it seemed like minutes were passing by before he took a breath. I called my husband and my mother to come down to the hospital right away. The doctor's took more x-rays and Devon was diagnosed with the RSV virus.

We were then put into the PICU and Devon stopped breathing again. He was then put on a C-PAP which pushes air into the lungs. The doctors were concerned about Devon's heart so they called Dr. Weinhouse and he ordered another ultrasound and that's when the news came. Devon would need open heart surgery as soon as possible. The doctor's were planning on doing the surgery after Devon healed from the RSV but the hole was getting bigger each day, so they trasported us to Children's Hospital in Detroit. While we waited to get transpoted the neurosurgeon came to see Devon and told us that he would need cranial surgery on his forehead as well.

Dr. Delius was his heart surgeon from the Dr. Walters team, and he was wonderful. Devon had as ASD and VSD repair to his heart on March 10, 2006. The reaction was immediate. His breathing slowed down from the 90's to the 20's and his heart rate went from 250 to 120!. It was absolutley amazing.

Ten days later we were able to go home! We were in the hospital for a little over a month so we were ready! Devon is now almost 7 months old and is thriving everyday. He just had his cranial surgery for Metopic Synostosis on June 28th and is healing beautifully! He has such a round little head now!

-- Steve and Shannon (Devon's parents)

Elijah

The Journey...

I remember the day we found out that Elijah had HLHS like it was yesterday. It was so cold and cloudy. It was January 21, 2006 and his Dad and I had gone in for our "BIG" ultrasound. Elijah was going to be the tie breaker. We already had a daughter-Hannah, who was 4 at the time and our son Travis was 20 months. We were so excited. I was sure us girls would out number the boys. But Jason was so eager to rub it in as soon as I said-"nope, it is a Boy!" It was plain as day, and I knew the second I got a glimpse that we would soon introduce a new little man into our home, our Elijah Carey Palmer.

My excitement soon turned into fear as the routine ultrasound started taking too long. This was our third child and I knew that an ultrasound doesn't typically take an hour. I began to panic and I remember Jason looking at me panicked and saying something's wrong, isn't it? After about an hour and a half and a lot of avoidance by the ultrasound tech's they looked up smiled and said "okay, sit tight and we will show this to the doctor." They came back about 15 minutes later with the doctor and he then looked at the baby for about 20 more minutes. All the while I kept noticing how much time they spent on his heart. Something was wrong. By this time I just wanted to scream. No one would say anything. He asked us to wait in the waiting room while he showed another doctor. We went back to the waiting room and all I could do was cry. What was wrong with our little boy? What weren't they telling us?

Little did I know that the news that we were about to hear would be so devastating. The doctor looked at us, with tears already streaming down my face and as cold as could be said "your baby has what is called Hypoplastic-Left Heart Syndrome." He drew a sketch of the condition and described it with as little detail as he could and gave us our "options": 1-abortion, 2-comfort care, and 3-the three step surgery. Streesing the fact that we only had about 2 weeks to make a decision and that most people in our situation chose to "terminate" the baby because they typically don't make it. I can remember his statements so clearly. I think the somehow became imbedded in my head. We were so angry. We were left with no information, no "I'm so sorry", nothing. Just, hurry, make a decision.

After much thought, a ton of research, the support of our family and so many women from Hearts of Hope and more prayers than we ever thought we could say, we chose to go with the 3-step surgery and give our baby the best life we could. We chose U of M as our hospital and Dr. Edward Bove as Elijah's cardiothoracic surgeon. We didn't know the road we were turning on to, or if we had chose the right path but we knew that God was going to be with us and that was enough. My pregnancy was rough. I was very emotional all of the time. I cried everyday. But more than that, I prayed. Sometimes it was because I was so angry at God for doing this to us and to my little baby. Other times, it was out of desperation for answers. But they always ended the same...begging God to heal Elijah's little heart.

God didn't heal his heart. But he did give us a great kid. He gave us great surgeon's and doctor's to help fix Elijah's heart. Elijah was born June 30, 2006 and I couldn't have fallen more in love with a healthy baby. He was so beautiful and absolutely perfect. He had his first open-heart surgery when he was 10 days old. It was so hard to see my baby laying there. I couldn't hold him, couldn't even touch him for the first few days. Stimulation wasn't good for him. But he was alive, and I knew he was going to do good. He was my boy...our little fighter! He spent 32 days in the hospital after birth. Days were incredibly long. Every three steps Elijah took forward he took 2 backwards. The machines alarmed constantly and it drove us insane. There was so much information to take in and so much to learn. So many questions. Oxygen saturation's? Medication's? TPN/Lipids? CPR? Home heath nurses? Doctor's visits? It was so tough. Every night I feared that the phone would ring. I feared going to sleep. I didn't want to leave the hospital. If I was there he could sense it and feel my love. I feared that smell of the elevator's opening up on the 5th floor. It was the craziest roller coaster ride I had ever been on. The emotion's were out of control. I missed my other babies. They didn't understand it, but I had to do what was best for Elijah. He needed me more and they were being taken care of and loved. I had to be there for everything that happened. I wanted to be his Mommy. I wanted to change his diapers and feed him. I wanted to bathe him. I wanted to be the one he saw when he peeked through his sleepy little eyes. I wanted him to know that he was loved and there was more to life than pain. I wanted so badly to take his pain away. So many times I just wanted to scoop him off of that bed and kiss him and cuddle him, but I couldn't and I didn't. That would jeopardize his recovery and that was not allowed.

After we brought him home, life really began again. HE WAS FINALLY OURS! We could finally be a family. Of course we were very careful. No visitor's without screening. We didn't go anywhere for a long time except to the doctor's. We had a few hospital stays for illnesses but other than that life was normal. We had a beautiful, happy baby boy. He would smile and everything and soon began to laugh at everyone. We felt like our life was so blessed by him.

Elijah had his second surgery, the Hemi-Fontan when he was 4 months old. Since then he has just grown by leaps and bounds. He is such a normal kid. He is now 8 months old and rolls all over the house. He is so funny and so sweet. He has a tooth and working on his second. He has a temper, and is stubborn just like a little boy. So far he loves food...not big on a bottle. For a baby that the first Doctor didn't give much of a chance, he sure is full of life! We thank God everyday for Elijah. He has been our little miracle and continues to be every day!

Thank you for reading our journey. If you would like to read more about Elijah he has a carepage set up at www.carepages.com CP name is EliPalmer

Becky & Jason-proud Mommy and Daddy of Elijah, Big Sister Hannah, and Big Brother Travis Evan

Evan Talsma

Son of Eric and Amy Talsma, was diagnosed with Ebstein’s Anomaly at a routine ultrasound around 20 weeks. Evan was born at 34 weeks at DeVoss Children’s hospital in Grand Rapids Michigan on August 22, 2006. At that time the severity of the Ebstein’s was diagnosed as moderate to severe displacement of the tricuspid valve with moderate to severe regurgitation. Evan’s heart looked, and sounded like, a washing machine with red and blue blood being mixed together. Evan’s skin and lips and fingers had a blue tint to them at different times.

He did extremely well despite the set backs of also being diagnosed within a few days of birth with Wolff-Parkinson-White Syndrome (WPW), Supraventricular Tachycardia (SVT), a Ventricular Septal Defect (VSD) and an Atrial Septal Defect (ASD).

For the first eight months of his life Evan was on different medications and in and out of the hospital a few different times. It was when Evan was eight months old, that he started showing signs of congenital heart failure. It was at that time that he had his first open heart surgery at the Mott’s Children’s Hospital in Ann Arbor. At the time of surgery he had a modified maze procedure done to help with the SVT, and he had his VSD repaired. The tricuspid valve was not repaired or replaced at this time because he was so young.

Evan has done extremely well since that time. He still has Ebstein’s Anomaly and ASD but rarely can anyone tell! He is an active, funny, and smart 2 ½ year old that runs and jumps and keeps up well with his two older brothers. It is not sure when or if Evan will need another surgery but we take it one day at a time and bless God for all our children.

Gabriel

My name is Gabriel Lee Burton. I was born with a very complex heart disease consisting of detroversion of the heart with transposition of the great vessels, pulmonary valve atresia, large ventrical septal defect and status post right Blalock-Taussig shunt. In other words I was born with no Pulmonary artery, the bottom 2 chambers of my heart were opposite of the way a normal heart works and I had a large hole in the bottom 2 chambers allowing all of my blood flow to mix together. This resulted in my oxygen level always reading low (75%-80%).

I had my first heart surgery when I was 1 week old at Mercy Medical Center in Des Moines, IA and came through it with flying colors. We got to come home from the hospital 5 days later! My last surgery wasn't such a breeze. This was my major, corrective heart surgery in Ann Arbor, MI...quite a long trip from home for an 19 month old to travel although mommy thought I did extremely well. Surgery was performed on January 21st, 2007 and although the surgery itself was a complete success I was a very sick little boy when I came out of recovery. I was pretty much in a controlled coma for 3 weeks after surgery. I finally ended up getting to go home with my mommy and soon to be step-dad exactly 5 weeks from the date we had left for my surgery. Post surgery I'm doing great! I will have to have valve replacement surgery sometime down the road but for now I'm enjoying life as a 2 year old at home with mommy and daddy.

Update - Surgery #3 is scheduled for April 1, 2008 in Ann Arbor, MI. A patch on the back side of Gabriel's heart used to re-route blood flow has narrowed at an alarmingly fast rate. The way Gabriel's heart sits it would be next to impossible to open the patch back up with a cath so open heart surgery will be required. Please pray for him.

UPDATE - Surgery #3 HUGE SUCCESS! Surgery was performed on April 1, 2008 and we were on our way home on April 6th! PRAISE GOD!!!

Graham

Graham was born on March 8, 2003 with a couple major heart defects that went undetected throughout the pregnancy. He was born with critical aortic stenosis. His aortic valve was narrow and leaky and it made his left ventricle very large. He was air lifted from Troy Beaumont to U of M in Ann Arbor just hours after birth. The doctors were unsure that he would make it through the night. He surprised them and did. After talking with several doctors, specialists and the surgeon; his parents were told the only viable option for Graham was to have a heart transplant.

Graham was put on the heart transplant waiting list at just a few days old. After five long weeks went by, the call everyone had been longing for had finally come. On April 18, 2003 Graham received the gift of life and had a heart transplant at 6 weeks old.

The recovery was long and Graham remained in the hospital for 10 weeks after the transplant. It was during that time that yet another defect was noticed. It was a coarctation of the aorta, which is a narrowing in the aorta. In Graham’s case it narrowed where the donor heart and part of his original aorta were sewn together. This was ballooned during the time in the hospital, but this was only a short term fix. It was surgically repaired in October of 2003.

Unrelated to his heart, he was diagnosed with Sagittal Craniosynostosis, a premature closure of one of the skull sutures. During September 2004 he had a cranial vault repair surgery to reshape his skull and make room for his brain to grow and expand. As is typical for Graham, he bounced back in a matter of days.

Graham has been dealing with feeding issues since he was a baby. He is 100% G-tube fed (a tube surgically placed in his stomach). Because he was on the breathing machine for so long, he lost the instinct to suck and swallow. The tube enables Graham to get the nourishment his body needs to grow and get strong until he eventually learns to eat. He also needed to have a Nissen fundoplication because he vomited every feeding. This is a surgery where the stomach is wrapped around the esophagus to prevent vomiting. He’s had this done twice. Graham is still very orally defensive, but we go to therapy to help with his oral aversions and prayerfully he will eat one day.

Graham’s also had several other surgeries including a left diaphragm placation, pylorotomy, ear tubes and his tonsils/adnoids removed. He is also anemic, has asthma and wears glasses for far-sightedness.

His most recent battle is dealing with the diagnosis of Colitis (like Crohn’s). But hopefully the right medication will be found to help alleviate the chronic diarrhea this causes.

If you saw Graham on the street you would never know that he has been through 10 surgeries. He is such an amazing little boy who loves playing with his brother and sister. Graham takes anti-rejection medications everyday. But to him, all of this is normal, and he simply takes it all in stride. He is a true miracle.

Tim & Angela (Graham's parents), big brother Nathan and little sister Lainey (Oxford, MI)

Hank

My name is Hank Wyatt Van Ast. I am proud to be 4 years old on June 4, 2005. My middle name means “Little Warrior” because I am battling Hypoplastic Right Heart Syndrome. My parents say I am a strong boy. When I was in my mommy’s tummy at 20 weeks old, I surprised everyone with an uncommon congenital heart defect. I caused quite the excitement when I was born in the Emergency Room at the University of Michigan hospital in Ann Arbor. I guess my parents were too relaxed about getting to the hospital. But thankfully I was in good hands. After being in “pretty good heart failure” according to the doctor, I had open heart surgery at 4 days old for placement of a shunt and to open my pulmonary artery. I did well except for a few times when my oxygen level went really low and the doctor’s thought they would lose me.

Two weeks later I got to go home, but 2 days after that I developed a fever and had to be readmitted with an incisional infection. It was a scary time for my parents. I am very thankful for a multitude of prayers that came from all over the world. I was able to be sent home with a PICC line. The first 2 ½ years of my life were tough for me. Although my heart was doing well, I didn’t sleep or eat well; and I had complications from 2 other unrelated surgeries.

I have a little sister, Anneke, who was born 12 ½ months after me. We have kept my parents very busy, especially since when we were babies we both had colic for a very long time. Sometimes Anneke says she wants a “special line” too so mommy lets us draw a colored line on our tummies; I like orange, Anneke likes yellow. Then we’re both happy. We are best friends and we love to play together. My other favorite things are to build things, create things, explore nature, dig holes outside, and scare my sister.

My doctor’s say that now the right side of my heart has grown to a normal size. I can do everything other kids do, but sometimes I get tired faster. My doctors say that before I turn 5 they want to close the shunt and close my ASD. Sometime when I’m a young adult they say I’ll need a valve for my pulmonary artery. In 2 weeks on Nov. 6, I have another surgery to remove my adenoids because they grew back. I hope the surgery will go better than the last time. I welcome your prayers!

I can’t wait to meet you all with my family at the 2009 Hearts of Hope Fall Festival!

Love,
Hank

Joshua

Joshua Matthew is our miracle! In April of 2003, at our 20 week ultrasound, we were told that our baby boy would be born with a heart defect called Hypoplastic Left Heart Syndrome (HLHS). We were shocked and overwhelmed. However, as we began making preparations we drew comfort from God’s word and the support of our family and friends. Our research led us to the U of M Mott Children’s Hospital in Ann Arbor where we met the incredibly talented Dr. Edward Bove, a cardiothoracic surgeon, who specializes in HLHS repair.

On August 15, the morning after the blackout, Josh made his appearance. He weighed 6lbs 4 oz. His head was covered with black hair and he immediately filled our hearts with love! Josh was taken to the NICU so that they could start the medications necessary for his heart. He was covered with IV’s, lines, and probes; however, we were still able to spend time holding him. We treasured every minute! Four days later, Dr. Bove performed the Norwood procedure, the first stage of the repair. Giving Josh up for surgery was one of the hardest things we would ever do! By the grace of God, Josh had an uneventful recovery and three weeks later we were sent home. We were elated and nervous. Thankfully, as time passed we learned to relax. We grew accustomed to giving his medications and amazingly, Josh had no feeding issues whatsoever. The cardiologists kept telling us that Josh was doing exceptionally well for his situation. We felt so blessed!

Josh was 5-½ months when Dr. Bove decided to perform his Hemi-Fontan surgery. The surgery went well and we were home within five days. We settled back into our routine and especially enjoyed watching Josh reach new milestones. Josh’s first birthday brought celebration and tears of joy! His third stage procedure, the Fontan, took place this past April and we were home within twelve days. Unfortunately, Josh developed a pericardial effusion and had to be readmitted for another four days so that the effusion could be drained.

Since then Josh has been doing great! He is a typical two year old with an incredible amount of energy and an adorable smile. He loves to play with his big brother Zach as well as his baby brother Luke. Josh has brought so much love and happiness into our lives. He has taught us more than we could ever imagine.

We thank God for the incredible staff at U of M, for the support of our family and friends, and for the amazing heart families we have met along the way. Above all, we thank God for our miracle!

2007 update

Joshua continues to do well, thankfully! He now only sees his cardiologist once a year and is down to Enalapril and one baby aspirin a day. He loves putting puzzles together, playing with Legos, and wrestling with his brothers. Sometimes we forget all that he has been through, and yet at the end of each day, we still find ourselves whispering a prayer of thanks to God for each day spent with our miracle!

2012 Update

Joshua continues to do well! He is now ready for 4th grade and he loves archery, drawing, and building Legos. He is almost 9 years old and sees his cardiologist once a year!
Matt and Sheila (parents), big brother Zachary, and baby brother Luke, and sisters Lexi, and Gracie

Kelsi

Kelsi was born on 11/11/04, and a short time after it was discovered that she had a congenital heart defect. The next morning Kelsi was transported to Children's Hospital in Detroit. Kelsi was diagnosed with Hypoplastic Left Heart Syndrome and Pfeiffer Syndrome, a genetic disorder. We were totally devastated to find out about her problems in the first place, and now we were faced with the biggest and toughest decision of our lives.

It was explained to us that we had two options. Although this heart defect cannot be corrected, it can usually be treated with a series of operations, or a heart transplant. With her needing cranial facial surgery later on to correct her skull, caused by her Pfeiffer Syndrome, the heart surgeon (Dr. Henry L. Walters III) suggested a transplant instead of the multiple surgeries. We decided to wait for a donor heart hoping that Kelsi could make it until then. She was on the donor waiting list for about 2 months.

During that time, Kelsi contracted an illness, twice, called Necrotizing Enterocolitis (NEC). Luckily, the NEC did not get severe enough either time to constitute an operation to correct it. Both times she had NEC, she was taken off the transplant list for 2 weeks at a time. During that time, she was passed on the waiting list by another baby that came to the hospital about a month after Kelsi did. Yet another heart breaking set back.

But in the end, on January 20, 2005, Kelsi received a donor heart and is now doing extremely well. She has also made it through her first cranial surgery without any problems at all. There are no words to describe how thankful we are to have to met with Dr. Walters that day and everything he did to save our little angel, also the amazing donor family, and the extremely hard and unselfish decision they had to make to donate their son Tommy’s organs, which made it possible for Kelsi to be with us still today. Tommy and his family will never be forgotten. Thank you!!

-Chris, Wendy (Kelsi's parents), and big brother Gage

Kendyl

Kendyl was born on 1-1-06. Her heart defect was a complete surprise. Shortly after her birth she was diagnosed with TGA, and sent to the University of Michigan where Dr. Devaney did a complete arterial switch. 2006 is still a blur. Kendyl is doing great and has no restriction. She adores her big brother and is our "little Firecracker"!!!!!!

-Rod, Melissa (Kendyl's parents), and Big Brother Chase

Lance

We found out there was a “problem” with our baby’s heart at the 18-week ultrasound. Nobody wanted to diagnose the exact “problem”, but the situation was described by the doctors as hopeless. We were “reminded” several times over the course of several weeks that we could terminate the pregnancy due to the severity of the “problem”. After several weeks of more tests & ultrasounds, we were told that it looked like it was developing into HLHS. We immediately began researching the subject, and were soon overwhelmed.

Our research consistently seemed to converge on one hospital with renowned recognition as experts on HLHS. All indications pointed to the University Of Michigan, Mott Children’s Hospital (Congenital Heart Center) and the miracle worker Dr. Edward Bove. We soon met with Dr. Bove, who finally diagnosed our “problem” as HLHS. We left the consultation with Dr. Bove feeling as comfortable as one could feel in our situation. Our options were to choose the 3-stage surgery, heart transplant or compassionate care. We chose the 3-stage surgery. We were confident we were making the right decision and doing all we could possibly do to give our baby the best chance at survival. We were to leave the rest in God’s hands.

Lance was born on May 12, 2001 at Mott Children’s Hospital, after being induced. It was a relatively normal delivery. Post delivery was a different story. Lance was stabilized, and at 6 days old, had his first surgery (Norwood Procedure). Lance did very well, and was home in little over two week post-op.

Lance was monitored closely by UofM for the next several months in order to prepare and time the second stage surgery (Hemi-Fontan). At 4 ½ months old (Oct 2001), it was determined that Lance was ready for the Hemi. Again, Lance came through very well. He was home in about one week post-op. He had normal baby issues. He was getting ear infection frequently, and had to have tubes inserted. He grew slowly, but was as active and as loving as anyone could expect from any child. We were thrilled to have such a blessing from God.

Lance underwent his final stage (Fontan) at 2 years old. During pre-op his cardiologist at UofM found a blood clot in Lance’s left ventricle. It seemed to be the size of a quarter. After consulting with other cardiologists they agreed to proceed as scheduled with the Fontan. We went in the hospital a week early and they started him on heparin. He spent his 2nd birthday in the hospital recovering. Again, Lance did relatively well with recovery. He went home on coumadin along with his other meds. He eventually had tubes reinserted in his ears (he outgrew the old ones) and had his adenoids out as well, which is common for small children with frequent ear infections. Since his Fontan, Lance had to be readmitted to Mott one time for a condition called Protein Losing Enteropathy (PLE) which put him in congestive heart failure. He was treated with IV heparin and diuretics. Lance has been doing fantastic since.

During these 4+ years, we have seen the worst of times, but have also seen the best of times. Out of this tragedy have come many blessings. We have met so many wonderful people. The support of our “heart moms” (Hearts Of Hope) has helped tremendously in our journey. Our biggest blessing is our little miracle boy.

Lance attends preschool and is doing very well. He runs around with his older sister Samantha (6 ½ years old) and all of his friends. This summer, he played t-ball (he loves the game) and gymnastics. If it was not for the little scar down the middle of his little chest, you would never know he has a heart condition. We are so lucky to have Lance in our lives. We have seen a miracle, and will continue to enjoy him as long as God allows.

Our Family:
Ann (mom), Dave (dad), Samantha (sister) & Lance (Troy, Michigan)

Michelle and Dominic

I was born on October 3, 1969 with pulmonary stenosis, an atrial septal defect and right ventricle hypertrophy. Four months after my birth I had open heart surgery in an effort to correct the 3 defects. At Children's Hospital in Detroit, Dr. James Green stitched the hole between my heart chambers and slit my pulmonic valve to promote better blood flow through the valve. Throughout my life I was pretty much unaware of a significant difference between me and other kids. I think as children we really don't see that life could be different and freely accept the way God made us. My mother saw my "zipper" each day and was reminded of the turmoil of my first year, but for me - it was who I was and my life was ok because I had parents who loved me and a family to love in return. My younger brother was also born with PS and had open heart surgery. My interests were the same as my peers, although I was not permitted to do physical activities (gym class in elementary school was not as much fun for me as it was for my peers). I took ballet and played the piano - "safe" activities for someone with a heart problem.

I continued to see my pediatric cardiologist throughout my teen years and then transitioned to an adult cardiologist when I was in college. Besides the occasional catherization and echo-cardiogram - life was pretty uneventful. Living now in Grand Rapids, I married and asked my doctor about having children and was told to have them sooner than later. He really didn't know how my heart would tolerate pregnancy and thought it was best for me to not expect a big family. I gave birth to my first child in April, 1996. My "high risk" pregnancy with Marisa was monitored closely. I had a "cardio-ultrasound" to determine the fetus' status and it was identified she had a healthy heart.

My second pregnancy a year later followed the same protocol. At my cardio-ultrasound with this child other non-heart related issues were raised. I gave birth to a daughter stillborn in December, 1997. We are unsure of the exact reason for her death.

In January, 1999 I became pregnant. Once again, I was closely followed and nothing was indicated on the special ultrasound. At 37 1/2 weeks I had another ultrasound to determine the position of the baby. The radiologist who read the report also noted a discrepancy with the baby's heart. We began to prepare ourselves for the birth of an infant with pulmonary stenosis. Looking back, in a strange way I feel blessed - having CHD myself and knowing I was doing ok really prepared me for giving birth to a child with CHD. It was not new to me. Dominic was born on September 10, 1999 at 8 lbs and 15 oz. My hospital room was filled to the brim with all different kinds of doctors. Dominic was whisked off to Neonatal to be monitored and assessed. I held him a brief moment before they took him away. His father stayed with him constantly and I would be wheeled down to see him often. He looked like a giant next to other babies in the ICU - most born premature. It was determined we could take him home after a week or so. His pediatric cardiologist, Dr. Schneider let us know he would have outpatient surgery in mid October (he was one month old) to repair the pulmonary valve. Dominic had a successful valvuloplasty and came home the same day. Now, living back in metro Detroit, he continues to be seen regularly by his pediatric cardiologist - Dr. Nancy Cutler. He is 7 years old and lives a "normal" life.

My fourth pregnancy brought us our third child - Natalie. Once again with this pregnancy I was closely monitored. All the test showed a heart functioning properly. Natalie was born with a healthy heart in December 2000.

Motherhood kept me quite busy and my heart defect was not a focus of mine for a long time. Five years had passed since I had been seen by a cardiologist so I visited Dr. Harold Freeman of Oakland Hills Cardiology in January 2006. He was gravely concerned by the condition of my heart, especially the size of my right ventricle. He ordered a MRI and wanted me to visit the only adult congenital heart specialist in Michigan, Dr. Julie Kovach of the University of Michigan Medical System. Before my scheduled May 2006 appointment, I suffered an episode of Atrial Fibrillation/Atrial Flutter and was hospitalized at Beaumont Hospital. It was a traumatic experience for me. I was very nervous at the condition of my heart. But, thanks to the amazing talent and knowledge of medical staff and doctors - the problem was controlled and my appointment in Ann Arbor was moved up. Once things got moving it was decided I needed to have surgery again to replace my pulmonary valve with a pig's valve. Also a Maze Procedure (creating scar tissue in the upper heart chambers) would be done to eliminate the risk of future fibrillation. On July 6, 2006, Dr. Eric Devaney performed surgery on me at U of M's Mott's Children's Hospital. The surgery was a success and my recovery on the pediatric floor was not too difficult. Because my problem is from birth - a pediatric cardiac surgeon is best suited to perform the operation. Recovering with CHD children was a blessing to me. Their youth filled spirit and unquestioned faith truly lifted me. I thank God for this wonderful gift of life.

Now I visit Dr. Kovach annually and may very well need another valve replacement down the road. The advancements in medicine are mind boggling and very encouraging. I am so lucky there is a road to travel down.

Sincerely,
Michelle ~ Troy, Michigan Teddy

Ted

Or Theodore Leon was born on June 5, 1995. Ted was delivered a planned C-Section as 10 days previous it was determined he was breech. He was a big baby weighing 9 lbs. 3 oz. and 22 ¾ inches long. He was born at Crittenton Hospital in Rochester, Michigan. All his apgar scores were very high. Ted was sent to the nursery & within several hours, the nurse noticed that Ted was breathing fast. They then put him in an oxygen tent. The nurse said that it was very common for a C-Section baby to have this problem & it usually lasts for less than 24 hours.

The next morning, Ted was still breathing fast. Dr. Roug, the neonatologist & Ted’s pediatrician, Dr. Avanish Chawla were checking on him. Dr. Chawla noticed that he heard a heart murmur. They proceeded to do a Heart Echo & determined he had a serious heart defect. By the time the doctors informed Karen what was the happening, the transport team from Children’s Hospital of MI were already at the hospital & ready to transport Ted.

As you can imagine, Karen called her husband Mark, who had just pulled into the parking lot at work, and told him that something was wrong with Ted’s heart & he should talk to the doctor. Mark headed down to Children’s with his niece. Mark’s sister headed to Crittenton to stay with Karen.

Mark met with Ted’s cardiologist, Dr. Victoria Tantencgo and Cardiac Heart Surgeon, Dr. Hakimi. Mark was told that Ted has HLHS (Hypoplastic Left Heart Syndrome). They explained our options, which were: to do nothing, to have a 3-part surgery or to have a heart transplant. The doctors recommended the 3 surgeries. Mark was very upset and consulted with our priest of how he could break the news to us that our son, could die. We truly never expected that we would have a boy, as Mark’s family is loaded with many girls and he is one of the only boys. This was a very hard time for us anyway. Ted is named after his 2 grandfathers: Theodore, Mark’s dad, who had died of heart disease when Mark was 11 and Leon, Karen’s dad, that was diagnosed with a 2nd type of cancer in April just before Ted was born. We truly felt that God had given us this child, named after his grandfathers & would not take him away from us.

Ted did very well for all his surgeries. He had his Norwood procedure at 13 days old. He did go into cardiac arrest after 7 hours of surgery and they knew something was wrong; they took him back into surgery & found his “patch” had pulled away. They fixed it & he did very well. It was a 13 -hour day but I will never forget the smile on Dr. Hakimi’s face when he came out at 8:30pm and I knew my son was going to be ok. Ted was home from the hospital in 2 ½ weeks. The doctors had predicted he would be in the hospital about 2-4 weeks. We were very fortunate that he came home without any feeding tubes & eating was not an issue.

He returned at 6 months to have his Hemi-Fontan. He did great except the fact that he got the stomach flu & an ear infection at the hospital, but came home 4 days after surgery.

He continued to grow & do very well. Karen’s mission was to have him learn to walk before his 3rd surgery at 20 months old. They stayed in quarantine, as it was January, so they wouldn’t get sick, & Karen helped Ted accomplish walking before his Fontan.

He ended up staying in the hospital for 1 week after surgery, as his tubes were still draining and once again, got an ear infection. Ted’s recovery was very good and we are all very thankful.

Ted went for checkups every 6 months at Children’s Hospital. Ted was on quite a bit of medication but was taken off all medication about age 6 or 7.

Ted has continued to grow & learn. He did go to preschool at age 2 ½ for physical & occupational therapy, as he was a little behind. Ted was a little behind with his speech as well & did get some therapy for that as well. He didn’t speak until about 2 ½ but once he did, he spoke in full sentences. We knew he was listening, but he was just waiting until he was ready to talk!! Ted was so excited to take the bus at 4 when he attended Headstart at the CERC building. Mom was a little hesitant, but Ted was very excited to be going on a bus like his big sister does. Ted continued to progress well & did do a pre-K/ young fives class before beginning Kindergarten.

Ted did struggle with beginning to read, but with some extra help has done well.

Ted did get put back on digoxin, lisinopril & baby aspirin at age 10. His heartbeat was not as strong & the medication would help as his sinus rhythm was not always working as the scar tissue was interfering with the impulses. Ted had no symptoms and this was detected during a scheduled 24-hour monitor. The medication has worked very well.

Ted began to play T-ball at 5 and has continued to play baseball. He also started playing flag football at 11 years old & absolutely loves it. Ted loves to play all sports as well as watch them on tv. He is always the one who knows the schedule of games or the latest score of the Detroit Red Wings, Pistons or Tigers as well as any sport that is on tv.

Ted has attended Campodayin, a camp in Minnesota, for kids with heart disease, since he was 8 years old. The camp runs from Monday afternoon to Friday afternoon. There are 3 different weeks for different age groups. It is a great camp and he has such a great time. They do many different activities including horseback riding, crafts, and group games, swimming, boating, tubing & fishing. There is a cardiologist at the camp as well as a nurse assigned to each cabin, which is about 8 kids with 2 counselors. The buildings are air-conditioned. The staff does a great job to make the best experience for the kids.

Ted continues to be on the medications listed above & goes for check ups every 6 months. Ted has done very well in 6th grade last year and we anticipate the same for the upcoming school year.

Ted is now in 7th grade. His is doing great academic wise & really likes school. I should clarify by saying that he likes school but not the schoolwork or homework. He has been playing flag football for the past 3 years in the fall. He absolutely loves it & is very fast. He usually was a running back or receiver but this year was the quarterback. He did very well. He also continues to play baseball in the spring. This past year, he played 1st base & loved it. Now with the school having teams for his age, he was able to be a manager for the football team & is now the manager of the basketball team. He really enjoys being part of the team & is a great help to the coaches.

We are very grateful to God that Ted continues to do so well. We know that Ted can be an inspiration for many parents & younger children and we are always willing to share his story. We are so thankful to the Cardiology surgeons, doctors & nurses at Children’s Hospital of Michigan that have & continue to care for Ted. He is our miracle & we try to enjoy each day with him!

- Karen Swietlik, mom of Ted

Tyler

Tyler Wayne Foley was born with congenital heart defects. I found out the end of October 2004 I was pregnant, very shortly before I was diagnosed with diabetes. As soon as I was confirmed pregnant they immediately put me on insulin. It was a very rocky pregnancy; I saw my OBGYN very frequently and at one point I was told I didn’t have enough amniotic fluid then I had too much fluid. I had several ultra sounds throughout the first several months. I was told at one appointment they could not find all four chambers of the heart and was immediately sent to a high risk doctor in Indianapolis. They also could not see all 4 chambers. I had an amniocentesis at 18 weeks to check for other chromosomal abnormalities and thank God everything came back fine. I had a pediatric cardiologist come in at 23 weeks and did a fetal echo. It was confirmed that he only had one valve in his heart and that the left ventricle was too small. Wow what heartbreaking news this was for me.

I continued care at both my regular OB doctor in Anderson and also the high risk in Indianapolis, with fetal echocardiograms from the pediatric cardiologist frequently to track any changes that may occur. At 36 weeks and 1 day my water broke at 2:30 a.m. I called the high risk doctor and told him what happened and he said he would meet me at the hospital as soon as I could get there. The roller coaster was about to begin - on May 26, 2005 Tyler Wayne Foley was born by c-section, 4lbs 4oz and 17inches long. Diagnosed with HLHS, Unbalance AV canal-right dominant, double outlet right Ventricle and COA, I didn’t know what to expect other than at 5 days old he was having his first of three open heart surgeries. (BT-shunt)

When I was able to finally see him they told me what to expect and his chest was open. He was so swollen and I could see his little heart beating inside of him and all the wires and IV’s attached to him. We had a lot of problems after surgery. He was not peeing (he also has only one horseshoe pelvic kidney) so he was placed on a CVVH dialysis for several weeks and it was not helping. The doctor called Cincinnati’s Children’s Hospital and asked about doing a permanent peritoneal dialysis. We agreed and he was loaded into an ambulance from Cincinnati and I followed closely behind. Meanwhile all of the St Vincent Indianapolis staff said there goodbyes before we left with there thinking he would not be coming back to Indy. Long story short, we were in Cincinnati for a week and came back to Indy still alive and no peritoneal dialysis done as he started peeing normally.

We were able to take him home for the first time after 9 weeks in the hospital. Things were good and at almost 9 months old he had his second surgery (bi-directional Glenn). He did wonderfully and was home in a week after this surgery. In December of 2007 he was diagnosed with RSV and was hospitalized from Dec 18th and was able to come home Christmas Eve. He was hospitalized again Dec 29th for a possible blood clot or possible infection in his heart. He was able to come home again January 12th only to go back again January 17th for low oxygen saturations. He was transported from the St Vincent Indianapolis hospital via ambulance to Riley Children’s Hospital in Indianapolis. That visit was another rocky one all in its own. He was diagnosed with Heart failure. After a few weeks there they talked to me about needing to do a Heart Transplant as they told me he only had 6 to 12 months to live. Tyler went through all of the pre-transplant procedures but was never listed.

He came home for the last time on Deb 9th 2008 and has since overcome his heart failure. He is now 4 years old, very active and full of energy and pretty much stable with mild to moderate depressed heart function. He is awaiting his 3rd and hopefully final open heart surgery (Fontan) which is being talked about but he is still relatively small and at this time the doctor is concerned that his ventricle dysfunction may prohibit doing the final surgery. He is a very active 4 year old little boy that wears mommy out daily.

Tyler’s carepage, tylerfoleysheartpage begins May 5 2007 thru present. The carepage tylerfoley begins June 13, 2005 thru May 5, 2007.

Calvin and Connor

Connor was diagnosed with HLHS when Trisha was 18 weeks pregnant. He had his surgeries at 5 days, 6 months, and 20 months at Children’s Hospital of Michigan. With our last surgery (Fontan) he was home pulling a wagon by day six. He has been a fighter since birth. It was heartbreaking to see him go through all 3 surgeries, but I stand amazed at his strength and courage. He is 11 years old this month and is doing great with his heart. We have only had one set back with an arrythmia (probably from flu) but not in the past few years. He has tremendous energy (understatement) and takes on every day with determination. Connor loves to write, play his guitar, and make up jokes.

A few years later I had his brother Calvin, he was born a little premature (36 weeks) but was doing well initially. About two weeks of age, he started breathing funny and not eating well. By the time we got to the cardiologist he was in full blown heart failure. Calvin had a severe coarctation of the aorta and when his duct finally closed (closes late when you are premature) he wasn't getting any blood flow to his body. He immediately went to OR for the heart surgery. Since then he has done great and just now required a heart catheterization for his ASD (atrial septal defect). Now Calvin is all fixed and there is no other surgeries planned. He enjoys baseball and running with his friends.

They do have a sister Reese, who is heart healthy and does her best to keep up with the boys.

-Trisha Leonard, Mom to Connor, Calvin, and Reese