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A medical first helps baby girl beat odds

Stent is implanted before her birth

(Correction: Because of a photographer's error, a caption in Saturday's City & Region section on a group photo of the medical team that performed a pioneering prenatal heart procedure incorrectly described them as staff from Children's Hospital Boston. Members of the Brigham and Women's Hospital staff were also on the team and in the photo.)

(Correction: Because of a photographer's error, a doctor holding a stent was misidentified in a photo caption accompanying a story in Saturday's City & Region section about a pioneering prenatal heart surgery at Children's Hospital Boston and Brigham and Women's Hospital. Dr. Doff McElhinney, an interventional cardiologist who was photographed with the device, was incorrectly identified as Dr. Wayne Tworetzky. Also, Tworetzky's surname was misspelled in the caption.)

The parents of Grace VanDerwerken faced a grim choice last year when doctors in Virginia discovered a potentially fatal heart defect before she was born. Angela and Jay VanDerwerken were told they could either terminate the pregnancy or subject the newborn to immediate open-heart surgery that had only a 20 percent survival rate.

Rather than accept the long odds, the couple went to Children's Hospital Boston and Brigham and Women's Hospital for a first-ever operation last November. Yesterday, 17-day-old Grace went home as the only patient in the world to receive a stent before birth. She will have to return for more surgery in four to six months, but so far, doctors say her recovery has been ''extraordinarily smooth."

Grace was born on Jan. 10 ''looking a healthy pink . . . without any sign of a breathing problem," said a relieved Jay VanDerwerken, a far cry from the gasping, oxygen-deprived baby she might have been without the operation.

Grace was diagnosed in September with hypoplastic left heart syndrome, a condition in which the left ventricle, the heart's main pumping chamber, fails to fully develop. Making her condition particularly serious, the wall between the two sides of her heart had no opening to let blood out, which meant it would back up into her lungs and make it hard to draw her first breath. After the VanDerwerkens were given the prognosis, they researched prenatal heart surgery centers and came upon the Boston team, which has done 60 fetal surgeries to correct defects in the left ventricle.

The team from Children's and Brigham and Women's decided it could greatly improve the child's survival chances by making a small opening in the wall that divides the pumping chambers and then prop it open with a mesh stent identical to the ones used in patients with blocked arteries. On Nov. 7, a team of 16 specialists operated on the 30-week-old fetus at Brigham and Women's, using a fine needle at the end of a wire to penetrate the tiny heart wall and implant the stent.

When Grace was born, she still had a heart defect, but she was no longer at risk of immediate death. Three days after birth, she had the first of three operations to correct the underdeveloped pumping chamber, operations that doctors at Children's say have a mortality rate of less than 15 percent.

The VanDerwerkens were delighted to take their daughter home to Ashburn, Va., but they know they'll have to accept some uncertainty about Grace's future. ''There's really no data to go on when you're the first," said Angela VanDerwerken.