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Q&A: Prenatal surgery raises hopes, questions

New research is offering hope that children with spina bifida, a serious birth defect, can be operated on while still in the womb, giving them a much better chance at a healthy life. Each year in the U.S. there are about 1,500 cases of spina bfida, which can lead to paralysis, deformities and sometimes death.

NBC News Chief Science Correspondent Robert Bazell reported the story, and answers questions here about what this groundbreaking study means.

Fetal surgery is pretty amazing under any circumstance. What makes these surgeries and this research on fetal surgery for spina bifida so significant?
Robert Bazell: This is the first time fetal surgery has been attempted for a condition that is not necessarily fatal to the child. So the doctors had to be especially careful that the risk to the mom was worth it. All the groups in the U.S. performing fetal surgery for spina bifida agreed to carry out the procedure only in this one randomized trial.

One of the doctors you interviewed said it's her goal to cure all diseases before birth. Do you think that could really happen? Bazell: She said that was an audacious statement -- looking far into the future. But as imaging techniques to see the fetus in the mom get better,  and as surgery technology improves, there will certainly be more conditions where what would have been birth defects can be repaired before birth.

How risky is this surgery for the mothers?
Bazell: That was one of the key points of this study. The moms who had the fetal surgery did have more complications, although none was deemed serious and there were no deaths. In particular, there was a higher risk for premature birth. Moms who elect this surgery will have to fully understand all the risks they are taking to themselves before they volunteer.

You spoke with families who participated in the research trial. What sort of emotional journey was it for them, learning that their unborn baby has this birth defect, then getting into the trial, going through surgery, and beyond?

Bazell:
The emotions could hardly be more intense. First the couple learns their child has a defect that could cause complications as severe as death, paralysis, mental retardation or a life-long need for a shunt in the brain to drain excess cerebral spinal fluid. Then they learn there is a trial involving surgery in the womb. But to enter it, they have to agree to have a computer randomly decide whether they will get the fetal surgery or the standard of care: surgery right after birth. Then there is the wait for the surgery, the worry about premature birth after the surgery, the birth at last and the exams to see how much damage the child has suffered. 

The trial was stopped after marked benefits were shown. Does that mean it’s actually available to the general public, or is it still early and controversial?
Bazell: It will certainly be available at the three centers that conducted the trial: UC San Francisco, Children's Hospital of Philadelphia and Vanderbilt.  The big question is whether insurance will pay for it, and no one knows yet. Neither has anyone estimated the actual cost of the surgery  -- except that it will be high. It requires seven physicians and a huge support team to care for both the mom and the child. All volunteers for this clinical trial got free care.  Doctors will argue the huge expense is justified because the cost of life-long care for kids and adults with spina bifida can be very high.

How many doctors are authorized to perform this specialized surgery? Will there be a waiting list for it?
Bazell: There is no agency that authorizes doctors for any surgery. But any parents considering this complicated procedure should go to a facility with as much experience as possible. It is too soon to know how great the demand will be.

Doctors say the condition affects 3.4 in every 10,000 births. How early do parents learn?

Bazell:
The rates for live births vary from country to country and even within countries, because some parents learning their child has spina bifida chose to terminate the pregnancy.  Doctors can detect the possibility of spina bifida with certain blood tests. But they usually are only certain it occurs with an ultrasound from the 18th to the 24th week of pregnancy.

Related: More information on spina bifida from the National Institutes of Health

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