In-Utero Surgery Offers Hope

On Nov. 7, a team of specialists -- cardiologists from Children's and high-risk obstetrical specialists from Brigham and Women's Hospital -- used ultrasound imaging to guide a catheter through Angela VanDerwerken's abdomen and uterus into the heart of the 30-week-old fetus, a 1 1/2 -hour operation.

A fine needle, followed by a wire with a preloaded balloon, was pushed into the left atrium and then through the atrial septum to reduce the pressure that was causing the atrium to expand with blocked blood. The balloon was inflated until the atrial wall widened. Then the same process was used to create a second hole in the septum, only this time, a tiny stent was put in place.

Cheers rang through the operating room when heart monitors showed blood flowing through the stent. But doctors would not know how successful they'd been until Grace was born by vaginal delivery Jan. 10.

At birth, Grace weighed a healthy 8 pounds 2 ounces. And unlike babies born with similar heart defects, she was pink and without any signs of breathing problems.

"It was very exciting," said James Lock, chief cardiologist at Children's Hospital Boston. "After the baby was born, most of the cardiologists in the hospital walked by her bedside just to see if it was really true" that she was rosy and healthy. "I'm very optimistic that she'll do well."

Hypoplastic left-heart syndrome is serious enough that many babies found to have the malformation are not carried to term. Doctors at Children's treat five to 10 cases a year.

Grace is the fourth child for the VanDerwerkens, who said they believed they were on track for another healthy pregnancy until a second-trimester ultrasound.

Excited to learn the baby's sex, they brought their three young children with them to the obstetrician's office to be there for the news.

But in addition to learning that their baby would be a girl, they were told doctors couldn't quite make out the baby's heart. More tests were done before doctors delivered the devastating news, suggesting they consult with specialists.

Even after the surgery to insert the stent, Angela VanDerwerken said she couldn't let go of the fear that her child might not be healthy enough to have the surgeries necessary to thrive. It was Grace's birth and appearance of health that gave her hope.

"That was the point when I let myself realize she's here and she's going to stay, instead of thinking she might die all the time," VanDerwerken said. "When we saw she was doing so well, we knew she had a fighting chance."

After her birth, Grace spent a few precious moments with her parents, who took pictures and introduced her to her siblings: Hannah, 7, Jackson, 6, and Ethan, 3.

She spent the next eight days in intensive care preparing for, and then recovering from, the first of three open-heart surgeries. She'll have the second when she's about 6 months old and the last when she's 2 or 3.

"It's been a miracle," said Angela VanDerwerken, who is flying home today to Hidden Pond Place with her husband and daughter. "I'm very grateful for all of this."