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.
Prenatal Surgery Not Without Risks, Experts Said
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.
Questions to consider when you choose a center for prenatal spina bifida surgery:
- What is the experience of the individual team members in performing the prenatal spina bifida surgery and in caring for both patients: mothers and babies?
- Does the team include the following members: fetal surgeon; neurosurgeon; maternal-fetal medicine specialist; maternal and fetal anesthesiologist; fetal cardiologist; neonatologist; advanced practice, operating room, labor and delivery and neonatal surgery nurses?
- Similarly, what is the experience of the team working together to perform this procedure and provide all care around it?
- Was the center a participant in the landmark Management of Myelomeningocele Study (MOMS)?
- Has the program published its basic and clinical spina bifida research findings in recognized scientific journals — thereby helping to advance the field’s knowledge?
- Is the pediatric hospital in which the fetal spina bifida surgery is performed ranked among the best in the world?
- Does the program have a dedicated birth unit within the pediatric hospital, staffed and fully equipped to manage the delicate delivery required after fetal surgery for spina bifida?
- Is the newborn intensive care unit experienced in caring for babies born after fetal surgery for spina bifida?
- Are all pediatric subspecialties that may be needed by the baby — such asorthopaedics, urology, physical therapy and radiology — immediately available?
- Does the hospital have a comprehensive program for long-term follow-up of spina bifida patients as they grow?
- ****Information for this entry was gathered from http://www.chop.edu/service/fetal-diagnosis-and-treatment/spina-bifida.html and http://abcnews.go.com/Health/w_ParentingResource/spina-bifida-babies-face-outlook-surgery-womb/story?id=12877182****
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