Pittsburgh Post-Gazette

In rare success, British surgeons save baby born with heart outside her body

- By Alan Cowell

The New York Times

LONDON — Surgeons in Britain have saved the life of a baby girl who was born with her heart outside her body as a result of a rare condition that usually leads to the terminatio­n of pregnancy or death, the hospital where she was treatedsai­d Wednesday.

The Glenfield Hospital in Leicester, England, said the infant, now named Vanellope for a Disney character, was born with a rare condition known as ectopia cordis and had been thought to have less than a 10 percent chance of survival. The surgery to relocate her heart was said to be the first successful procedure of its kind performed on a newborn child in Britain, although a few comparable cases have been reported in theUnited States.

Her parents, Naomi Findlay, 31, and Dean Wilkins, 43, of Nottingham, England, discovered in June that they were expecting their first child. A scan at nine weeks showed ectopia cordis, with the heart and part of the stomach growing externally, the hospital said in a news release.

The condition is extremely rare — estimated at five to eight cases per 1 million live births. “Because of the risk of infection, as well as the risks from the associated defects, pregnancie­s may be terminated or babies may die in the womb or soon after birth,” the hospital said.

“All the way through, it was, ‘The chances of survival are next to none. The only option is to terminate. We can offer counseling,’ and things like that,” Ms. Findlay, the mother, told The Leicester Mercury newspaper. “In the end, I just said that terminatio­n is not an option for me,” she said. “If it was to happen naturallyt­hen so be it.”

Hospital officials in Leicester said the medical team knew that other physicians had tried to perform the same procedure at intervals of roughly two to three years, but none had been successful in Britain.

The baby was delivered by cesarean section on Nov. 22, about a month before her due date, the hospital said. She “wasimmedia­tely wrapped in a sterile plastic bag” to keep her organs sterile and the tissuemois­t. A team of around 50 performed the procedure, the hospital said, including obstetrici­ans, surgeons, anesthetis­tsand midwives.

“At around 50 minutes of age, it was felt that Vanellope was stable enough” for the team to begin “the task of putting her entire heart back inside her chest,” the hospital quoted Jonathan Cusack, a consultant neonatolog­ist, as saying.

Frances Bu’Lock, a consultant in fetal cardiology, told the BBC that the procedure to save the child was “touch and go.”

Thebaby was born without a breast bone, Dr. Bu’Lock said, and physicians are planning to create some form of artificial sternum at a later stage. After three operations, the infant’s heart, which had protruded through a hole in her chest, is now in her body andcovered by her own skin.

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