Experimental surgery in the womb saves baby born last week

From the St Louis Post-Dispatch:

St. Louis has joined a handful of cities nationwide performing a rare and somewhat controversial surgery on a fetus with an undeveloped diaphragm, a life-threatening condition that allows organs to float into the chest and severely restrict lung growth.

The baby that had the fetal procedure — Ali Davis (pictured) — was born Jan. 22 at Cardinal Glennon Children's Medical Center, the first to be delivered at the pediatric hospital because he needed immediate access to a heart-lung machine. To everyone's surprise, Ali's oxygen levels were high enough that he did not need the machine for his first five hours.

"The fetal operation may have caused these changes and ultimately may lead to survival," said surgeon Dr. Ed Yang, co-director of Cardinal Glennon's Fetal Care Institute, which opened last summer.

The operation was also ground-breaking for fetal surgery because Yang experimented with using a gel instead of a balloon to help the lungs grow, which Yang hopes will prove less risky.

It was a procedure Ali's mother, S'ala Davis, 26, of St. Louis, was willing to try. "I'd rather someone take a chance and try to save my son's life than to have not tried at all," she said.

At 20 weeks gestation, an ultrasound revealed that Ali's lungs were virtually undetectable. His liver, a solid organ, was in his chest. Ali had a severe form of congenital diaphragmatic hernia, which occurs in about 1 in 2,500 babies and is more common than spina bifida, muscular dystrophy or cystic fibrosis.

CDH varies widely in severity and outcomes. In best cases, infants do well with surgery after birth. In the worst, babies survive only days. The national survival rate is about 50 percent, according to the Association of Congenital Diaphragmatic Hernia Research, Awareness, and Support.

Yang believes with fetal surgery, he is offering an alternative in cases with little hope.

The surgery — called tracheal occlusion — involves using a tiny scope to place a balloon in the baby's airway, trapping fluid in the lungs and forcing them to expand. That balloon, however, must also be removed in a second surgery before the mother goes into labor. Each surgery increases the women's risk of delivering prematurely. A 2003 study shows that because of this risk, tracheal occlusion does not improve survival rates.

Yang believes blocking the airway with a gel that dissolves after about four weeks will result in better outcomes. "It's new. It's risky," he admits. It requires moms such as Davis willing to be a part of research. "They are doing this for future babies," Yang said. The hospital paid for the surgery, he said.

Some, however, question the science used to predict which babies with CDH will do poorly. "We lose babies with good predicted outcomes, and we see survivors among babies with horrible predicted outcomes," said Dr. Brad Warner, chief pediatric surgeon at St. Louis Children's Hospital.

Before coming to St. Louis, Yang studied at three fetal surgery centers and directed the fetal program at Vanderbilt Children's Hospital in Nashville, Tenn. He studied CDH cases closely, he said, and feels confident that with a variety of tests, he can accurately predict which babies will likely die.

The gel helped Ali's left lung to grow significantly, but not the right. More may have been needed, Yang said. Ali's prognosis is unknown, but his first few hours give his mom hope. "He came out fighting," Davis said.