Heterotaxy Syndrome

Expert, Coordinated Care for Rare Congenital Heart Defects

Heterotaxy syndrome is a rare, congenital (present at birth) condition, where a baby’s developing body has a problem determining the left and right sides. Heterotaxy translates to “different arrangement.” This causes problems where the baby’s liver may go across both sides of the abdomen and the spleen may be missing altogether. It also means the structure of the heart, lungs and blood vessels can be in the wrong place. Since heterotaxy syndrome

happens while a baby is growing in the womb, it’s often diagnosed during prenatal tests.

At Nemours, we offer leading-edge capabilities to detect problems early, including babies still in the womb. If your baby is diagnosed with heterotaxy syndrome, you can trust the pediatric heart care in our Nemours Cardiac Center. Our board-certified, fellowship-trained pediatric cardiologists are here to answer your questions, address your concerns and offer treatment options.

Services We Offer for Heterotaxy Syndrome

The expert teams in our Nemours Cardiac Center locations offer a full range of pediatric heart care and other specialties kids with heterotaxy syndrome will likely need as they grow. Services vary by specialist and location, but may include:

Fetal Diagnostics. Early detection in our perinatology and fetal medicine centers help us diagnose some congenital heart defects and make a treatment plan for when your baby’s born.
Cardiac Catheterization. A procedure used to diagnose or treat cardiac problems by inserting a thin plastic, flexible tube (called a “catheter”) into an artery or vein, and threading it through the bloodstream into the heart and its large blood vessels.
Cardiac Diagnostics and Kid-Friendly Imaging. State-of-the-art, noninvasive and minimally invasive tests for kids of all ages.
Cardiology. Your child’s cardiologist will help with medications and monitoring, as well as long-term treatment plans and preventive care.
Cardiovascular Genetics Counseling. For conditions that are caused, at least in part, by changes in genes.
Gastroenterology. Our digestive care experts work with your child’s cardiologist and registered dietitians create personal nutrition plans.
Heart Surgery. Not all children will require surgery for heterotaxy syndrome, but we offer advanced procedures for congenital heart disease.
Neurology. Experts in brains and nervous systems, this is an important part of the long-term follow-up care for kids born with heterotaxy syndrome.

Why Choose Us for Heterotaxy Syndrome

World-class heart care requires the compassion to understand your family's journey, and the expertise to heal even the most complex conditions. Our cardiac surgeons treat a vast array of heart defects in infants, children and teens, using the most innovative, up-to-date approaches. Our specialty is the early detection and repair of heart problems. Our heart care specialists have been recognized for their commitment to delivering top-notch, compassionate care to children with congenital heart disease. We work closely with your family to help your child live their life to the fullest.

Regional Heterotaxy Syndrome Highlights

Services, programs, facilities and care teams differ at each location. Call for details.

Delaware Valley/Greater Philadelphia

We offer care for newborns and children with heterotaxy syndrome at Nemours/Alfred I. duPont Hospital for Children (Wilmington, Del.) and select Nemours duPont Pediatrics locations.

The Nemours Cardiac Center located at Nemours/Alfred I. duPont Hospital for Children is ranked among the best children’s hospitals in the nation for pediatric cardiology and heart surgery by U.S. News and World Report.

Central Florida

We offer care for newborns and children with heterotaxy syndrome at Nemours Children’s Hospital (Orlando) and select Nemours Children’s Specialty Care locations.

Our renowned pediatric cardiology and cardiothoracic surgery team at the Nemours Cardiac Center in Central Florida offers inpatient, critical and surgical care at Nemours Children’s Hospital in Orlando — including dedicated cardiac anesthesiologists and state-of-the-art cardiac intensive care unit (CICU).

Northwest Florida

We offer heterotaxy syndrome care at Nemours Children’s Specialty Care, Pensacola and our hospital affiliate, West Florida Healthcare, with outpatient and follow-up appointments also available at select Nemours Children’s Specialty Care locations.

Our Nemours Cardiac Center in Pensacola is home to one of the few accredited pediatric transthoracic and fetal echocardiography labs in Florida and, if needed, can facilitate the transfer of extremely ill children between our Nemours Cardiac Center locations (e.g., to Nemours Children’s Hospital).