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.
Best Use of Resources?
In researching her book, The Making of the Unborn Patient, sociologist Monica Casper concluded that in the early years of fetal surgery, women were not adequately informed about the risks, though she believes that has changed. Doctors at Vanderbilt, in particular, she says, "have made themselves very open to outside ethical and legal analysis. They are not behaving in a secretive way."
But Casper argues that the procedure "is not the best use of resources. If we want to save babies, there are all kinds of other ways to be doing it. We can be providing better prenatal care and nutrition to all women in the United States rather than spending money on this experimental procedure."
Normally, when babies are born with spina bifida, doctors perform surgery within 48 hours to cover an open lesion on the newborn's back. By performing it before birth, doctors cannot correct nerve damage that has already occurred but, instead, hope to prevent additional damage or paralysis.
What's more, surgeons have found that fixing the spinal defect appears to correct hindbrain herniation, which causes death associated with breathing problems in 15% of children with spina bifida. It also reduces the need for a shunt by between 33% and 50%, according to Vanderbilt's research.
"If we have the chance to lessen the extent of injury, why wouldn't we do that?" asks Joseph Bruner, MD, director of fetal diagnosis and therapy at Vanderbilt, on a fetal surgery web site started by parent Todd Gardener to get the word out about the procedure.
The operation, which costs upward of $35,000 and is covered by at least one large insurer -- Aetna U.S. Healthcare -- requires a team of medical specialists, who open the mother's uterus, repair the opening on the fetus' back with a patch made from human skin, and then close the uterus.
'I don't have to wonder, what if?'
When Kelly Hasten found her baby had spina bifida, she considered "for a split second" another option -- abortion. But when she heard about fetal surgery, she decided that was the choice for her, despite the risks.
Two weeks after her surgery on Jan. 10, those risks became real when doctors discovered that amniotic fluid had leaked out of her uterus, possibly from the surgical incision. She has since been confined to hospital bed rest to await her delivery. That means she can see her husband and 7-year-old daughter only on weekends, since they live 90 minutes away.
"I'm about to go crazy," she said from her hospital bed, where she spends a lot of time researching spina bifida on a computer.
Nonetheless, Hasten says she's glad she went through with the operation: "I don't have to wonder, 'what if?'" she says.
Kathy Bunch is a freelance writer in Philadelphia.
