Surgery for Rare Heart-Related Genetic Syndromes
Helping Kids With Rare Genetic Conditions Thrive
Children with rare genetic syndromes that affect the heart, like Ellis-Van Creveld syndrome, Marfan syndrome and Turner syndrome, do better with an expert team working together. Nemours Children’s cardiothoracic surgery experts are recognized for helping kids from around the world with highly complex genetic conditions.
As part of award-winning heart centers in Delaware and Florida, we work closely with cardiovascular genetics specialists, fetal heart specialists, cardiac anesthesiologists, cardiac critical care intensivists, orthopedics specialists, neurologists, rheumatologists, and more. We perform innovative heart, chest, blood vessel and airway surgeries to help children with rare syndromes thrive.
We use the latest minimally invasive approaches that help make recovery a little easier. We also team with interventional cardiology specialists to perform complex hybrid heart procedures. That means we combine surgery with methods that use catheters, or small thin tubes, threaded through blood vessels.
Your child, and family, gets complete care at Nemours. In addition to care from nurses and advanced practice providers who are highly skilled in heart conditions, we offer emotional and neurodevelopmental support, rehabilitation therapies, enhanced recovery programs and more.
Our Services
Nemours cares for nearly all rare and complex genetic syndromes that affect the heart, including:
- Alagille syndrome
- Costello syndrome
- Down syndrome
- Ellis-Van Creveld syndrome
- Turner syndrome
- DiGeorge syndrome
- Marfan syndrome
- Morquio syndrome
- Muscular dystrophy
- Noonan syndrome
- Williams syndrome
- VACTERL associations
These genetic syndromes can involve coarctation of the aorta, atrial septal defects, cardiomyopathy, aortic aneurysm, heart valve problems, tracheal (airway) disorders and other conditions. We know what conditions to look for, and we treat them all.
We’re highly skilled in performing complex surgeries, and specialize in:
- Airway (tracheal) surgery
- Interventional catheter-based heart procedures
- Newborn heart surgery
- Mechanical circulatory support
- Single ventricle defect surgery
- Valve surgery
- Heart transplant (in Delaware)
Two Leading Pediatric Heart Centers
Our heart centers offer highly advanced, integrated care just for kids and young adults with congenital heart disease. Learn about our focused programs, innovative research and exceptional outcomes.
Costello syndrome can thicken the heart muscle. Learn more about this condition and treatment from the experts at Nemours KidsHealth®.
Children with Ellis Van-Creveld syndrome can have atrioventricular septal defects. Find out how it’s diagnosed and treated.
Noonan syndrome may cause heart problems like irregular heart rhythm and pulmonary valve narrowing or stenosis. Learn more.
- Learning delays
- Heart Smart
- Respiratory System
Conditions & Treatments
We see many conditions — far too many to list here. The conditions we treat vary depending on the location and providers selected. Don’t see a condition listed? Call us.
Related Specialties & Programs
Team-Based Expertise for Kids With Genetic Syndromes
Nemours cardiothoracic surgeons are sought for their expertise in helping kids with highly complex genetic syndromes. Families from around the world come here for our heart care.
6
Heart surgeons we have with advanced expertise in rare genetic conditions
350+
Number of heart surgeries we perform each year
2
Nationally recognized heart centers, in Delaware and Florida
Our team has vast expertise in rare genetic disorders. Nemours has pioneered surgeries, like tracheal reconstruction, for kids with Morquio syndrome.
We report our outcome data to a national database and compare our outcomes against national averages.
Our surgeons are researching ways to improve heart surgery success and recovery. We share our findings to help kids everywhere.
Team-Based Expertise for Kids With Genetic Syndromes
Nemours cardiothoracic surgeons are sought for their expertise in helping kids with highly complex genetic syndromes. Families from around the world come here for our heart care.
6
Heart surgeons we have with advanced expertise in rare genetic conditions
350+
Number of heart surgeries we perform each year
2
Nationally recognized heart centers, in Delaware and Florida
Our team has vast expertise in rare genetic disorders. We’ve pioneered surgeries, like tracheal reconstruction, for kids with Morquio syndrome.
Our surgical success rates for the most complex procedures are excellent, and better than national averages.
We offer second opinions to help families and their doctors make the most informed decisions.
We’re researching ways to improve heart surgery success and recovery. We share our findings to help kids everywhere.
Have Your Baby Here
The Nemours Advanced Delivery Program allows healthy moms to deliver at our children’s hospital in Delaware. This means your baby can get the critical care they need right away.
If you can’t deliver here, we have advanced neonatal transport equipped with lifesaving technology. We’ll get your baby here safely and quickly.
Convenient Follow-Up Appointments by Video
We offer follow-up appointments through scheduled, live video visits. You can avoid waiting rooms and save travel time. Ask your doctor if this is an option for your family.