CHD resources

The section of our site is a place where families can find educational materials regarding congenital heart defects.

Organizations

While Hospitalized

Hospitals and Medical Facilities

After Hospitalization

Lodging Options

Organ and Blood Donation

Travel Assistance

Organizations

Hearts of Hope SE Michigan
We are a non-profit organization located in the Metro Detroit area. Our mission is to provide support, hope, resources, and networking to families affected by congenital heart defects. We offer parent-matching, on-line support groups, newsletters, and annual events for heart families.

The Congenital Heart Information Network (TCHIN)
The Congenital Heart Information Network (TCHIN) provides reliable CHD information, resources, internet links, as well as support for families, adults, and health professionals.

Sisters By Heart
Sisters by heart is a group of heart moms who came together during their CHD journey. Knowing the challenges and difficulties they faced upon diagnosis, and more so, upon bringing their HLHS fighters into this world, they created Sisters by Heart to reach out and support parents of the newly diagnosed. A major aspect of their mission is to send care packages to new mothers (and fathers) who are at the beginning of their journey, to let them know that they are not alone and provide resources and understanding while their child undergoes care and treatment from birth throughout recovery.

The Heart Defects Society of Windsor and Essex County
The Heart Defects Society of Windsor and Essex County offers compassionate support within the community, provides educational, emotional and financial resources to improve the quality of life of individuals affected by Congenital Heart Defects. The Heart Defects Society will aim toward being a high profile non-profit organization in Ontario.

Adult Congenital Heart Association
The Adult Congenital Heart Association (ACHA) is a national not-for-profit organization dedicated to improving the quality of life and and extending the lives of adults with congenital heart defects (CHD). ACHA serves and supports the more than one million adults with congenital heart defects, their families and the medical community—working with them to address the unmet needs of the long-term survivors of congenital heart defects through education, outreach, advocacy, and promotion of ACHD research.

The Children’s Heart Foundation (CHF)
Founded in 1996, The Children's Heart Foundation funds the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects.

Little Hearts, Inc
Little Hearts, Inc. is a non-profit organization founded in January 1998. Their mission is to offer support and hope to families affected by congenital heart defects through their support services and to promote public awareness for this #1 birth defect.

Saving Little Hearts
Saving Little Hearts has been helping children with congenital heart defects and their families since 2002. This organization is dedicated to helping children with congenital heart defects and their families by providing financial and emotional assistance and educational information. Saving Little Hearts also strives to provide enriching, educational and fun experiences for these children which will help them build friendships and confidence.

The American Heart Association (AHA)
This site provides information about congenital heart defects, types of medical treatment / testing, a glossary of terms and other helpful information.

Heart Disease Online
An online organization that provides useful information about the symptoms and types of congenital heart defects. Dr. Mani Sivasubramanian, heart surgeon and Heart Disease Online founder, gives you a bird's eye view of Congenital Heart Disease. This site also offers support information and gives tips on how you can help spread awareness.

Songs of Love
The Songs of Love Foundation is an nonprofit organization dedicated to providing personalized songs for chronically ill children and young adults. These one of a kind compositions are a wonderful source of joy and inspiration to the special people who receive them. Visit their site and request a song for your child today. Just click on the "Request a Song" link, fill out the form, send it in, and within weeks, your child will be able to listen to his/her unique song.

Big Hug Remembrance Gifts
Big Hug offers special remembrance gifts to honor a loved one. Choose from beautiful tree plaques, benches, memorial stones and much more.

While Hospitalized

Care Pages
CarePages are free, personal, private Web pages that help family and friends communicate when someone is receiving care. You will be able to share sensitive information securely, post updates, share photos, and receive messages.

Insure Kids Now
Need health insurance? Your state, and every state in the nation, has a health insurance program for infants, children and teens. The insurance is available to children in working families, including families that include individuals with a variety of immigration status. To learn more, make a free call to 1-877-KIDS-NOW.

Hospitals and Medical Facilities

University of Michigan C.S. Mott Children’s Hospital
Each year, hundreds of children and their parents travel from around the state, nation, and world to receive care from the specialists at the Michigan Congenital Heart Center, part of the University of Michigan’s Cardiovascular Center. From specialized prenatal diagnosis to minimally invasive procedures, and from open-heart surgery to long-term follow-up care, the MCHC provides some of the best care available anywhere for infants, children, adolescents and adults with congenital heart defects and diseases.

Children’s Hospital of Michigan
The Department of Cardiovascular Surgery at Children's Hospital of Michigan has a long and distinguished history of service to patients from throughout the state and the world. Their mission is to provide expert, compassionate and state of the art surgical care for all forms of congenital heart disease. Their patients range from newborns weighing less than one pound to fully mature adults. They specialize in single staged repairs of complex congenital cardiac lesions, performing cardiac transplantation when necessary.

Children's Hospital Boston
The Cardiovascular Program at Children's Hospital Boston is a world leader in pediatric cardiology and cardiac surgery, and has pioneered treatments that have dramatically improved the survival rate for fetuses, infants, children, teens and adults with congenital or acquired heart defects.

Children's Hospital of Philadelphia (CHOP)
The Cardiac Center at The Children's Hospital of Philadelphia is a multidisciplinary Center that consists of 500 highly-skilled professionals including cardiologists, cardiothoracic surgeons, cardiothoracic anesthesiologists, critical care specialists, cardiac nurses, respiratory therapists, social workers and other dedicated health care professionals. The Cardiac Center has one of the largest surgical programs in the country and performs more than 1,000 surgeries a year. CHOP is a world leader in complex surgical repairs, advanced diagnostic and interventional cardiology, thoracic organ transplantation and specialized anesthesia for children with heart disease.

After Hospitalization

Children’s Special Health Services of Michigan
Children's Special Health Care Services (CSHCS) is a program within the Department of Community Health. It is for children and some adults with special health care needs and their families. If you think you or your child qualifies for CSHCS, call their toll-free Family Phone Line at: 1-800-359-3722.

Grants Available for Families Struggling with Child Health-Related Costs
The UnitedHealthcare Children's Foundation has announced that new grants are available to help children who need critical health care treatment, services, or equipment not covered or not fully covered by their parents' health benefit plans. UHCCF provides grants to families to help pay for child health care services such as speech therapy, physical therapy, occupational therapy sessions, prescriptions, and medical equipment such as wheelchairs, orthotics, and eyeglasses. Parents and legal guardians may apply for grants by completing an online application at the UHCCF Web site.

Michigan’s Early On program
Early On Michigan is a program designed to coordinate early intervention and other services for families who have children (ages 0 - 36 months) experiencing developmental delays or who have disabilities or special needs.

Social Security Administration
The SSA site provides parents, children, teens, and teachers with important information about Social Security.

Warm Belly Wetsuits
Warm Belly Wetsuits are comfortable adjustable Neoprene wetsuits that are specially designed in 5 sizes for ages 6 months to 12 years old. Since they are adjustable, each size can be worn for years as the child grows. They use quality 2 mm (1/8") nylon covered Neoprene that provides excellent insulation and is very comfortable. Your kids will stay warmer in the water longer! Perfect for heart kids!

Medical Alert Bracelets
MedicAlert provides comprehensive Kid Smart services that can safeguard and identify your child in an emergency. With a single phone call, emergency response personnel can access medical history and records, protecting your child against potentially adverse treatments or medication conflicts.

Make a Wish Foundation
This amazing foundation helps grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength, and joy.

Rainbow Connection
The Rainbow Connection makes the special wishes of children (only those residing in Michigan) with life-threatening or terminal illnesses come true. All wish requests are considered without regard to gender, race, or religious preference.

Camp Odayin: for Children with Heart Disease - Minnesota
Camp Odayin provides a residential camping experience for young people with heart disease, where campers discover outdoor, athletic, and creative activities in a safe and medically supervised environment. Camp Odayin's Residential program is for children with heart disease between 8 and 17 years of age, who would benefit from connecting with other young people who may share similar health, emotional, and social concerns. Camper eligibility is determined upon recommendation by a pediatric cardiologist and approval by the Camp Odayin Medical Director. The camp director and your child's cardiologist can help you assess if your child should apply to attend camp.

Camp Meridian - New Hampshire
Camp Meridian is a new and exciting FREE three day overnight camp for 8-12 year old boys and girls with heart disease. A “meridian,” or longitude line on a map, is a place from which any journey can begin. Their goal is to provide a safe and medically supervised experience that is fun and appealing for children with heart disease through a series of unique, fun-filled, guided activities allowing the children to realize their own untapped potential.

Camp Hope with Heart - New Jersey
The Hope with Heart organization provides a week long camp for children with heart conditions to be able to connect with other children with similar health issues, to realize that they are not alone and to enjoy their childhood as every child should.

North Star Reach
North Star Reach provides a life-changing camp experience for children with serious health challenges. Located in southeastern Michigan, the camp is set among tall trees and rolling hills with a beautiful lake and a clear view of the sky above. Integrated within this inspiring natural environment will be state-of-the-art medical facilities supported by partnerships with the University of Michigan C.S. Mott Children’s Hospital and other area children’s health centers. Opening 2014

Lodging Options

The Ronald McDonald House (Detroit)
The Detroit Ronald McDonald House provides a temporary, inexpensive "home away from home" for families. This supportive environment is made possible through the generous contributions of many organizations, businesses and individuals, and through the hands-on work of hundreds of volunteers.

The Ronald McDonald House (Ann Arbor)
The Ann Arbor Ronald McDonald House provides families with a temporary, inexpensive "home away from home”. Currently, rates are only $10 per night. This supportive environment is made possible through the generous contributions of many organizations, businesses and individuals, and through the hands-on work of hundreds of volunteers. You may call the Ann Arbor RM House at : (734) 994-4442.

The Med Inn (Ann Arbor)
This 90-room hotel is attached to the U-M Hospitals and offers comfortable, convenient accommodations. Each morning, patients and visitors can enjoy a complimentary breakfast. Double-bedded rooms, mini-suites and barrier-free guest rooms are available.

Additional Lodging in Ann Arbor
Many of the hotels give a better negotiated discount rate when it's booked through U of M's Patient and Visitor Accommodations Program. For assistance in reservations, contact the Patient and Visitor Accommodations Program at 800-544-8684 or 734-936-0135.

Organ and Blood Donation

Gift of Life
Gift of Life is the only non-profit full service organ and tissue recovery organization in Michigan since 1971. As an organization, the Gift of Life acts as an intermediary between the donor hospital and the recipient transplant center providing all of the services necessary for organ and tissue donation.

Are your friends on the donor list? Organ donations save lives. Yet Michigan is behind. We need more people to register to get to the same level of giving as the rest of the nation. Today, sadly, over 3,000 Michigan residents are waiting for transplants.

Tell your friends to text "organs" to 42660 to become an organ donor. People you know and love could benefit someday. Read stories of real people whose lives have been saved or improved by a transplant and those of people whose loved-ones gave the "gift of life" atwww.giftoflifemichigan.org.

Donate Life Coalition of Michigan
The Donate Life Coalition of Michigan was formed in 1994 to promote organ and tissue donation. Their goal is to encourage Michigan residents to accept organ and tissue donation as a fundamental human responsibility. They seek to accomplish this primarily through public education, legislative and professional education endeavors.

Donate Life
This is the official U.S. Government web site for organ and tissue donation and transplantation. Donate Life is maintained by the Health Resources and Services Administration (HRSA), Healthcare Systems Bureau (HSB), Division of Transplantation, an agency of the U.S. Department of Health and Human.

Donate Life Coalition on Donation
The Coalition on Donation is a not-for-profit alliance of national organizations and local coalitions across the United States dedicated to inspiring all people to donate Life through organ, eye, and tissue donation.

The American Red Cross
This site provides information on how to become a blood donor and how to sponsor a blood drive. Also, the site offers recipient stories. If you would like more information on donating blood, you can visit: You may call: 1-800-GIVELIFE.

United Network for Organ Sharing (UNOS)
The mission of UNOS is to advance organ availability and transplantation by uniting and supporting communities for the benefit of patients through education, technology and policy development.

Travel Assistance

Angel Flight
A non-profit organization of pilots and other volunteers dedicated to serving the community by arranging free private air transportation for medical patients who cannot afford to utilize normal, commercial transportation. Angel Flight also provides services to blood, organ and tissue banks. For more information call(800) 296-1217.

Mercy Medical Airlift (MMA)
Mercy Medical Airlift (MMA) is a non-profit organization based out of Virginia dedicated to serving people in situations of compelling human need through the provision of charitable air transportation. MMA is totally supported through charitable giving and the services of volunteer pilots and office assistants. Phone: 1-888-675-1405.