Genetic Heart Conditions
If your child has a genetic condition that affects their heart, they need a specialized team that knows how to keep them happy and healthy. Atrium Health Levine Children’s sees all types of heart conditions in kids, and our experts will work together to deliver innovative treatments that help your child have a brighter future.
Make an appointment
To learn more about treatment for genetic heart conditions at Levine Children’s, contact us at 704-373-1813.
About genetic heart conditions
Genetic heart conditions happen when babies are born with a genetic syndrome that causes heart problems. These syndromes include:
- Down syndrome (trisomy 21)
- Marfan syndrome
- Noonan syndrome
- Turner syndrome
- William’s syndrome
- 22q11.2 deletion syndrome
What we treat
We treat all types of heart issues, including:
- Aortic valve stenosis (AVS): A condition in which the valve that leads to the aorta (the large tube that carries blood from the heart to the body) does not open normally.
- Atrial septal defect (ASD): A hole in the wall of the heart between the 2 upper chambers.
- Coarctation of the aorta (CoA): A condition in which the aorta (the artery that carries blood to the heart) is narrow.
- Ebstein’s anomaly: A condition in which the valve between the chambers on the right side of the heart doesn’t close properly.
- Hypoplastic left heart syndrome (HLHS): A condition in which one side of a child’s heart doesn’t develop properly in the womb.
- Pulmonary valve stenosis: A condition in which the valve between the heart and lungs does not open properly.
- Single ventricle defects: A condition in which one of the heart’s lower chambers is too small or underdeveloped.
- Tetralogy of Fallot: A rare combination of 4 heart defects including ventricular septal defect (VSD), pulmonary valve stenosis, a misplaced aorta and a thickened right ventricular wall (right ventricular hypertrophy).
- Transposition of the great arteries: A condition in which the 2 main arteries leaving the heart are reversed.
- Ventricular septal defect (VSD): A hole in the wall that separates the heart’s lower chambers.
Treating genetic heart conditions
Our pediatric cardiologists, surgeons, imaging experts and other specialists will work together to create a custom treatment plan for your child. This plan could include:
Catheterization
Doctors can fix some heart problems by using a catheter – a long, thin tube that measures blood pressure and takes detailed pictures of the heart. Doctors insert this tube through a vein in the leg or neck, enabling them to diagnose and fix some heart problems without open-heart surgery. We’ve equipped our lab with the latest tools and technologies, which help kids go home sooner and recover faster. We also take steps to reduce radiation during catheterization procedures, and we have some of the lowest radiation exposure of any lab in the country.
Medication
For some genetic heart conditions, medicines (usually delivered through pills or an IV) are the best way to get your child’s heart to beat stronger or have a more regular rhythm.
Surgery
We are home to some of the nation’s top pediatric heart surgeons, and they have vast experience repairing many types of genetic heart problems. Our team does everything they can to make sure surgery is as easy as possible for patients and families.
Ventricular assist devices (VADs)
A VAD is a small pump that doctors place at the bottom of your child’s heart to help blood move through the body. These devices can support your child’s heart for several years and are often used to help children waiting for a heart transplant. Our surgeons have placed these devices in all types of children with all types of heart conditions, and they know how to help kids with VADs stay healthy and active.
Marfan syndrome program
We’re home to one of the few dedicated Marfan programs in the region, offering highly specialized care for kids with this condition.
Supportive services
A heart condition affects every part of your child’s life. That’s why we offer resources to support kids and their families, including:
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The HEARTest Yard. A program that provides in-home nursing support for children and families as they transition home from the hospital. This program is funded by the Greg Olsen Foundation and was launched after the former Carolina Panthers football player and his wife, Kara, has a baby with a severe heart defect.
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Cardiac neurodevelopmental program. Sometimes heart conditions can affect a child’s brain development and lead to things like learning delays. Our brain development experts will help your child overcome any challenges that come up as they grow.
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Genetic counseling. Our patients and their families have access to counselors who help them understand if family members or children are at risk of having the same condition.
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Pastoral care. Our chaplains offer religious and spiritual support when families request a visit.
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Child life specialists. These specialists help children and their families with things like getting ready for medical procedures. They can also help your child’s teachers and classmates understand their illness.
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Nurse navigators. These nurses support and build close relationships with each patient and family. They become experts on each child’s condition and medical history, teach parents at-home care, attend appointments to answer questions, discuss treatments and more.
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Nutrition specialists. These specialists help make sure kids have a balanced diet and are getting the nutrients they need to stay strong.
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Social workers. They help families with things like counseling, finding financial assistance and connecting with support groups.
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Camp LUCK. This free summer camp is for kids with heart conditions and their siblings. Camp LUCK helps children build a community with other kids who are having similar experiences.
Why choose Levine Children's?
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Specialized heart care. Levine Children’s is home to a team of experts who provide highly specialized heart care for kids. Our team has helped hundreds of kids with heart conditions live healthier lives. And we work with closely with Atrium Health Sanger Heart & Vascular Institute to give our patients access to the most advanced and effective treatments.
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Team approach. Many of our patients have complex conditions and need care from several different specialists. Levine Children’s is one of the few health systems in our region where kids can see all of those doctors in one place – from leading surgeons to geneticists. These experts work together to give each child the best chance of a good outcome.
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Experience. Our team has special training and decades of experience treating genetic heart conditions. This gives us the expertise to help children overcome even very rare heart issues.
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Surgical outcomes. Our cardiac surgeons have some of the region’s best outcomes for pediatric heart surgery. That’s one reason why U.S. News & World Report ranks us among the nation’s best children’s hospitals for cardiology and heart surgery.
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Lifelong care. Children with genetic heart problems are living longer, healthier lives than ever before – but sometimes, their heart condition may lead to other health issues later in life. Our team helps families monitor their child’s growth, brain development and more, supporting children for years after their initial treatment.
The HEARTest Yard Congenital Heart Center
1001 Blythe Blvd., Suite 500
Charlotte, NC 28203
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