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How CHOP Helped a Family and Their Baby Tackle a Rare Birth Defect


During a routine pregnancy ultrasound, the last thing anyone expects to discover is a birth defect. The baby’s sex? Sure. A nascent resemblance to Dad? Perhaps. But less often, soon-to-be parents are met with grim news: their baby is already battling a condition inside the womb.

Alison and Philip Chandra found themselves in this very position when they learned their son had heterotaxy syndrome. The rare condition (it affects only four in every 1 million babies) causes some organs to develop in the wrong places inside the body and can also cause heart defects. 

Prenatal exams of the Chandras’ unborn son, Ethan, revealed he had several spleens instead of the usual one and that his stomach was on the right side instead of the left. Ethan was also diagnosed with complex congenital heart disease (CHD).

The severity of the diagnoses caused major anxiety for the family. After consulting a cardiologist at their local New Jersey hospital, the Chandras decided it was best for Alison to give birth at a more specialized facility. For this, the Chandras looked to The Children’s Hospital of Philadelphia (CHOP), specifically the Hospital’s Fetal Heart Program.

There, a team — from fetal cardiologists to cardiac nurses to social workers — came together to support both Alison and her son. CHOP’s advantages were obvious: each year, the Hospital’s specialized program sees around 20 to 25 unborn babies with heterotaxy syndrome who have complex CHD, which is many more than most other hospitals in the United States. This meant that though the condition is rare, the physicians and specialists at CHOP had experience on their side — including experts in everything from advanced prenatal testing to heart surgery — and were uniquely equipped to tackle Ethan’s condition. This left Alison and Philip at ease throughout the process.

After several monthly visits, during which the Chandras learned even more about heterotaxy syndrome, Alison delivered Ethan at CHOP’s Garbose Family Special Delivery Unit (SDU), and several days later, Ethan underwent his first heart surgery by the Cardiac Center’s Thomas L. Spray, MD, chief of the Division of Cardiothoracic Surgery. After just a few days, Ethan was discharged from the Hospital. His open heart surgery was a success.

Ethan’s Progress

Ethan has had two open heart surgeries since he was born and may eventually need other procedures to further repair his heart and other defects. Still, his progress has been impressive. “We sometimes joke in the heterotaxy community about Ethan being the ‘valedictorian,’ but it’s kind of true,” teases his mom.

A social, joyful child, Ethan has met all of his milestones: eating well, being active and even walking at 9 months. And while Ethan’s condition is rare, his development is otherwise normal—a joy for his family. Alison explains, “He’s a really big fan of babies, cars, climbing things that shouldn’t be climbed, and wild dance parties when he’s supposed to be going to bed.”

In fact, most people wouldn’t even realize Ethan has heterotaxy syndrome. But that doesn’t mean the fight is over.

“The thing with heterotaxy is that it’s such an all-encompassing disorder because it can affect every single system,” says Alison. “You never really know what to expect in terms of how a kid will recover from even a simple procedure, let alone a major open heart surgery.”

For now, Ethan’s family and team of physicians are tasked with determining the best surgical next steps. And while the future can be uncertain for anyone dealing with a rare condition, it’s clear that should follow-up surgery or continued education be necessary, Ethan is receiving the best care at CHOP.

For more information about CHD, visit The Children’s Hospital of Philadelphia’s heart disease awareness month page.