April 30, 2001 -- Kelly Hasten was 17 weeks pregnant when an ul
April 30, 2001 -- Kelly Hasten was 17 weeks pregnant when an ultrasound showed that her baby likely would be born with spina bifida, a serious birth defect that can cause devastating, lifelong disability.
"Once they told me there was a spinal problem, I said surely there was something that could be done. Wasn't there a surgery?" says Hasten, 28, who lives in Bullard, Texas.
A few years ago, the answer would have been no. Hasten's unborn daughter would have been born with spina bifida, which can result in paralysis, poor bowel and bladder control, learning problems, and hydrocephalus, a buildup of fluid that requires surgical placement of a drainage tube in the brain.
But since the late 1990s, doctors at three U.S. hospitals -- Children's Hospital of Philadelphia, Vanderbilt University Medical Center in Nashville, and the University of California at San Francisco -- have been operating before birth on such fetuses, hoping to forestall damage to the brain and nervous system.
So far, surgeons have operated on 148 fetuses with varying results, including at least two deaths. Because the procedure is so new, doctors acknowledge it is still too soon to know whether the children who have undergone the operation will be healthier in the long run.
'It's only going to get better'
Though early research shows that babies who have undergone the procedure have better leg function and require fewer shunts to drain fluid from the brain, doctors and parents hope to get a clearer assessment with an upcoming study that would compare infants who got surgery before birth to those who received it afterward.
But for many parents of children who received the experimental fetal surgery, there is no doubt that their kids are doing better and suffering fewer disabilities as a result. In some cases, children are reaching normal developmental milestones -- for instance, walking and talking like other youngsters.
"I truly believe in my heart that it's helping kids, and in time it's only going to get better," says Jill Liguori, whose son Nicholas was born at Children's Hospital on Jan. 4, 1999.
Now age 2, Nicholas is doing "awesome," says his mom, a flight attendant from Granby, Conn. The toddler walks on his own and has shown no signs of hydrocephalus, although he needs to be catheterized five times a day and is slightly behind in his speech.
Liguori, who had two miscarriages before becoming pregnant with Nicholas, believes her son would not have walked as well as he does without the surgery.
"Nicholas is a normal little kid. He is doing extremely well. I do think it's due to the surgery," she says.
'Miracle Cure' Not Without Its Risks
For Janice and Hervie Lamb of Stonington, Conn., the benefits are not so clear.
Their son, Nathan, has not progressed as well as they had hoped. At 7 weeks of age he needed a shunt, and at 2 years old he is not yet walking. His cognitive abilities, however, are on target. Janice Lamb, one of the first women to have the surgery at Vanderbilt, was 28 weeks' pregnant when doctors operated on Nathan. Now doctors are operating as early as 21 weeks.
For parents whose children are not the medical miracles for which they had hoped, it can be painful to see other kids who are progressing so much faster, Lamb says. But small accomplishments, such as Nathan's learning to clap, to roll over, and to crawl, make her feel that the operation was worth it.
Even ardent supporters of the procedure acknowledge it is not a miracle cure. It is risky to both mother and fetus, and carries a host of ethical and moral questions. Until now, such high-stakes operations were undertaken only to correct defects that otherwise would kill infants. With spina bifida, surgeons are attempting to enhance life by treating a defect that is disabling but not necessarily deadly.
For women who receive the surgery, there is a risk of excessive bleeding, infection, and sometimes fatal side effects from drugs to control premature labor. They must have future children by cesarean section. And virtually all infants who have fetal surgery are born premature, increasing their chances of complications.
