A Rare Glimpse at the High-Stakes World of Fetal Medicine

Published on in Children's View

A rare glimpse at fetal medicineLesly Leiva was 12 weeks pregnant when she learned that her unborn baby, Lilly, had an enormous tumor growing out of her mouth. Her doctor in California said the baby would likely die at birth, and that continuing the pregnancy also could put Leiva’s own health at risk.

Devastated, the 23-year-old New Jersey native traveled across the country to CHOP’s Center for Fetal Diagnosis and Treatment (CFDT) in search of a second opinion and a ray of hope. She found both.

The large tumor was going to hinder Lilly’s ability to breathe on her own after birth, so the CFDT team devised a plan: After carefully monitoring the pregnancy, they would open the uterus almost as they would in a C-section. But before cutting the umbilical cord, they would perform surgery on Lilly to remove a large portion of her tumor. The result was lifesaving.

Leiva’s is just one of four awe-inspiring stories told in “Twice Born: Stories from the Special Delivery Unit,” a gripping PBS miniseries aired last spring, which follows four families with high-risk pregnancies who journeyed to CHOP from across the country in search of help not available elsewhere.

Over the three-part series, viewers also meet a Boston couple whose unborn child suffers from spina bifida; a North Carolina couple whose world is shaken when doctors reveal that their unborn baby has developed an often-fatal lower urinary tract obstruction; and parents who journey from Texas seeking hope for their unborn twins diagnosed with life-threatening twin-twin transfusion syndrome.

Over a 15-month period, the PBS film crew was granted unprecedented access to the center. More than 500 hours of filming captured the gut-wrenching decisions these parents must make for their unborn babies. The documentary marks the first time that fetal surgery, which is among the highest of high-risk surgeries, has been televised. It also offers insight into the passion that drives members of the CFDT’s clinical team, who are pioneers in the field of fetal medicine.

Thanks to them, Lesly and Lilly have done incredibly well. Lilly has undergone six surgeries at CHOP to remove the rest of the tumor and reshape her face. While she will likely need a few more surgeries to complete her care, she is a happy, healthy 2-year-old.

— Abny Santicola