Pediatric Heterotaxy Program

Cutting-edge care at one of only two heterotaxy programs in the nation

At Children’s Health, your child receives care from some of the country’s most experienced and innovative heterotaxy experts. We use advanced tests that almost no one else offers.

For example, our team developed two tests for biliary atresia that are much faster and less invasive than the standard method. We also offer rare tests for primary ciliary dyskinesia (PCD), a lung condition that can lead to frequent infections. PCD is common for children with heterotaxy syndrome, but many aren’t diagnosed until they come to us.

A multidisciplinary approach to help kids thrive

Children with heterotaxy syndrome need care from a wide range of specialists — from heart and lung experts to experts in gastroenterology and other areas. Our program provides a central hub for these specialists to coordinate their decisions and make the best plan for your child.

For parents, this hub helps you manage the many tests, scans and treatments your child may need. We’re your single point of contact, connecting you with local and national experts your child needs.

Our commitment to ongoing heterotaxy research

Our team leads research to better understand heterotaxy syndrome and improve treatment. Some projects explore which genes cause the syndrome and lead to certain symptoms. These projects will help doctors identify a child’s individual needs and recommend the best treatments for them. Other research helps medical teams test for lung and spleen problems that are common with heterotaxy.

Heterotaxy syndrome is a genetic condition that affects how a child’s organs develop. Some children have minor problems as a result. Others need multiple surgeries and lifelong care.

Children's Health℠ is proud to be one of only two centers in the country with a multidisciplinary program dedicated to children with heterotaxy syndrome.. We have experience in providing the best care for your child’s health while managing this condition. That experience includes newborns who need surgery right away to survive.

Our expert team uses advanced tests and treatments to help your child grow as strong and healthy as possible. We also do research that helps other doctors identify and treat different aspects of the syndrome.