In-Utero Surgery Offers Hope

Jay VanDerwerken of Ashburn, next to wife Angela, embraces their daughter Grace during a news conference at Children's Hospital Boston.
Jay VanDerwerken of Ashburn, next to wife Angela, embraces their daughter Grace during a news conference at Children's Hospital Boston. (By Josh Reynolds -- Associated Press)
By Leef Smith
Washington Post Staff Writer
Saturday, January 28, 2006

The operation was both delicate and complex, requiring the expertise of 16 specialists who worked together in November to thread a lifesaving stent into a malformed human heart. The procedure might have been routine were it not for the patient: a fetus nestled in her mother's womb.

After the surgery, on a heart the size of a grape, Grace VanDerwerken became the world's first fetus to have a cardiac device implanted, doctors said. Yesterday, Grace, just 17 days old, was discharged from Children's Hospital Boston, and she will fly home today to Loudoun County with her parents.

"It's been a miracle," Grace's mother, Angela VanDerwerken, 33, said yesterday in a phone interview shortly before a news conference in Boston to announce the "first of its kind" procedure. "She has an amazing outcome now."

Doctors who treated Grace weren't making hard-and-fast predictions about her long-term prognosis, but they said all signs point to a promising future, one that probably would not have been possible without creative thinking.

It was shortly after a routine sonogram that doctors told Angela and Jay VanDerwerken, 36, of Ashburn that their unborn child had hypoplastic left-heart syndrome, a congenital defect in which the left ventricle -- the heart's main pumping chamber -- fails to develop.

The condition requires three surgeries within the first several years of the child's life to rebuild the heart.

Making Grace's condition even more precarious was the presence of an intact wall, or atrial septum, between the two upper chambers of the heart, causing blood to back up into her lungs and damaging the tiny air sacs and delicate pulmonary vessels.

Even with open-heart surgery immediately after birth, doctors warned the couple that the infant had a 20 percent chance of survival.

"Things looked so grim," Angela VanDerwerken said. "We had to face the reality that she might not survive."

Although doctors at Children's Hospital Boston and Brigham and Women's Hospital have performed more than 60 in-utero procedures on the heart -- some of them to try to correct the condition Grace has by opening up the atrial septum -- the outcomes have not been as good as doctors had hoped. In most cases, the septum closed, and the baby was born with signs of lung damage.

A possible solution, doctors agreed, was to use a stent to prop open the septum to prevent permanent lung damage in the final weeks of gestation.

Grace, her parents agreed, would be the test case.


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