Feb. 9, 2011 — -- When Ryan Albertson was born with an exposed spinal cord, his doctors had devastating news for his parents.
"They didn't know if he was going to walk, ever," said Ryan's father, Kelly Albertson. "Most likely blind, brain damage, you name it. They gave me the worst the day he was born."
Baby Ryan was diagnosed with spina bifida, a sometimes-debilitating birth defect in which the spine fails to close around the spinal cord during the first months of pregnancy. Many babies born with spina bifida face lifelong paralysis and mental disabilities.
Twelve years and eight surgeries later, Ryan is now an active middle schooler who plays wheelchair basketball.
While the operations have made a big difference, a new study suggests children with spina bifida may do better, over time, if they have surgery before they are even born.
Researchers from nearly a dozen centers nationwide compared nearly 200 babies with spina bifida, half of whom underwent surgery in utero, while the other half underwent surgery after birth. They found that after one year, those who had surgery before birth were 30 percent less likely to need follow-up surgeries than infants who had surgery after birth.
Spina bifida is often detected 5 to 7 months after pregnancy begins. Surgeons can go inside a pregnant woman's uterus and gently stitch up the open spinal cord of the developing fetus. This stops the leaking of spinal fluid and spares a child brain and nerve damage.
"This is a big breakthrough. For the first time we can show a clear cut benefit, treating a non life threatening malformation by repairing it before birth," said Dr. Scott Adzick, chief of surgery at Children's Hospital of Philadelphia and first author of the study published Wednesday in the New England Journal of Medicine.
Seven out of 10,000 babies in the U.S. are born with spina bifida, and often require immediate surgery after birth to avoid complications, according to the Spina Bifida Association.
While prenatal surgery is not a new procedure, many experts wondered whether it would subject both the fetus and the mother to unnecessary added risk. For years, in utero surgery for spina bifida has been done sparingly. And many experts still say that while it now seems like a brighter option, its risks keep it far from becoming a standard procedure.
"This is a highly technical accomplishment," said Dr. William Walsh, a pediatrician at Vanderbilt University Medical Center in Nashville, Tenn., one of the participating study centers. "The complications decreased with experience and expertise of the team."
Researchers reported that women who underwent prenatal surgery had a higher likelihood of premature delivery and uterine tearing at the surgery site during birth.
"The reason we did the trial over the last seven years was my concern that the babies were all being born premature, and the risks of prematurity would outweigh any benefits of the surgery," said Walsh.
Some experts say past studies have overstated the benefits of prenatal surgery.
"Previous reports have erroneously excluded fetuses that aborted or babies that delivered prematurely outside of the fetal surgery hospital, thus making fetal surgery appear as if it was beneficial," said Dr. Elaine St. John, associate professor of pediatrics at the University of Alabama division of neonatology, who was not involved in the study.
"The risk of prematurity is substantial and can't be ignored," said Dr. Noel Tulipan, director of pediatric neurosurgery at Vanderbilt, who has performed over 200 prenatal surgeries. "The challenge going forward is to devise ways to reduce that risks associated with the prenatal repair."
Still, Tulipan said mothers who qualify and who are informed of the risk should have the option since the benefits of prenatal surgery are becoming clearer.
Ten years ago, Katherine Mulligan, 40, of Cincinnati, learned through prenatal testing that her unborn son Sean had spina bifida.
"We went in for our well-baby ultrasound at 21 weeks, thinking that we were just going to get a checkup, and we got the news there," said Katherine Mulligan.
Desperate for a solution, the Mulligans turned to friends and researched information about treatments on the Internet.
"Word of mouth was probably the first way we found out," said Sean's father, Mike Mulligan. "Somebody said, 'You know, they're doing so many amazing things with fetal surgery now,' not knowing for sure if spina bifida was something that could be treated with fetal surgery."
A couple of weeks later, Katherine Mulligan underwent prenatal surgery at Children's Hospital in Philadelphia. But it wasn't until her son's birth that the Mulligans saw how well the surgery went.
"They could tell immediately that he had sensation in his toes. He could wiggle his toes," said Mike Mulligan.
The Mulligans said they were initially concerned because Sean was born prematurely. Sean, now age 10, can walk without the help of crutches or a wheelchair. While he still struggles with gastrointestinal issues, a common condition associated with spina bifida, Sean has far surpassed his family and even his doctor's expectations.
"That's the gratifying thing. Not statistics and all that sort of stuff, but seeing that kid – seeing the impact of that operation on that kid," said Adzick, who was Sean's surgeon. "I don't think it gets better than that."