Pediatric surgeon at the University of Utah Health/Intermountain Primary Children’s Hospital, Dr. Stephen Fenton talks about performing surgery on an unborn baby to fix Spina Bifida.
Interview conducted by Ivanhoe Broadcast News in 2023.
How’s spina bifida seen in the womb?
FENTON: Typically, it’s caught on ultra sound, many on screening ultrasound when moms go in. Readily apparent usually to the technician and then subsequent OB that there’s something wrong with the baby. That moms then referred to a high-risk OB called a maternal fetal medicine physician who usually confirms the diagnosis and then refers them to field or center like ours.
And until recently, treating it was waiting until after the baby is born?
FENTON: Well, the moms trial were management of myelomeningocele study, was published in 2012 in the New England Journal of Medicine. And so since then, it has become more and more a standard of care in certain populations. So both mom and baby have to qualify to undergo field surgery. If not, then the neonatal surgery is the standard.
What’s the benefit of doing it while the baby is in the womb?
FENTON: If they qualify, we know that there is a reduction in the overall need for a ventriculoperitoneal shunt, it goes down to about 40% from 83%. We also know that there can be an improvement in overall lower limb and bowel function, and a reversal of what we call hindbrain herniation. So a little portion of the brain can actually herniate through the skull into the spinal column, and that can lead to lifelong problems. And so we know that if in certain populations of these kids, if they are treated within the womb, there’s a decrease or reversal of that defect.
What percentage of the mothers and babies are qualified for the surgery?
FENTON: Yeah. That can be hard. I would tell you it’s a smaller percentage of the moms that we see and it can be for various reasons, either health reasons for mom, maybe they’ve had a premature child already, or other issues with their uterus. And then for baby, we want to make sure that they’re going to benefit from this since it is a high-risk procedure. So the majority of moms that we see don’t necessarily qualify for fetal intervention.
Can you tell me a little bit about the surgery?
FENTON: Sure. Yeah, it requires a large team to do it. Before we even venture to do this, we’d been working on making sure that we had the expertise and the instrumentation and everything ready to go for a couple of years before we actually take the mommy and there’s a maternal anesthesiologists that helps her go to sleep and make sure that she’s stable during the case. We open the mother’s belly and then open the womb and expose the part of the child, the back that needs to be repaired. Or neurosurgeons then come in and do the repair and we close the uterus up and the mom up, usually she requires 2-5 days of recovery in the hospital. Then we plan for her to deliver several weeks later.
What are you repairing, exactly?
FENTON: So the repair is actually to cover and do a watertight seal of the back- of the defect in spina bifida. So there’s a defect where the spinal cord actually comes out through the back and is exposed to the amniotic fluid. So in order to close it, there’s multiple layers and you want to get a watertight seal to help find the benefits that we discussed.
And is this both incredible risks to the baby and the mom?
FENTON: Well, luckily, most moms have reproductive age are pretty healthy. And so in the right centers, the risk to moms should be very, very low from a mortality standpoint. But there are some reproductive risks long-term. They’re going to have to be seen by a high-risk OB anytime subsequent pregnancy happens, requires a C-section for delivery, if it’s performed open. And obviously there’s risk to the pregnancy that the operation occurs with. So rupture of membranes, preterm labor, fetal demise, etc. That the risk to baby is probably the highest. Obviously, demise is something that we worry about, doesn’t happen very often, but it’s something that can occur. Then what we really want to see is that improvement. So it doesn’t- it’s not 100%, but we certainly want to see that there’s reversal of the hindbrain herniation and no need for a long-term ventriculoperitoneal shunt.
What’s the prognosis for Abigail Rose?
FENTON: Actually, she’s done really great. She had the hindbrain reversal. We’ve seen her have improvement in their lower motor function. I think we’re already starting to see her move much more and meet those milestones that we would want to see her achieve.
Is there a sweet spot with how old the baby, or fetus, is in the womb to do this surgery?
FENTON: Yeah, that’s a good question. The theory is that the damage to the spinal cord is secondary to exposure to the amniotic fluids. So obviously we don’t want that damage to occur for a prolonged period of time. Most of the time we’re trying to repair it by around 26 weeks gestation, so that we have subsequent time in the womb for hindbrain reversal to occur and for that inflammation of the spinal cord to resolve.
Is that the earliest that you’ve done as of Abigail Rose?
FENTON: Yeah, usually, we do it around 25 or 26 weeks gestational age.
Do think you have been able to change her life in the future?
FENTON: She has long-term prospects of having a pretty normal life with minimal complications neurologically, and that’s what we look for in these kids.
How long was the surgery?
FENTON: The surgery itself took about an hour-and-a-half.
What size are you working on when you’re working on just your little backbone at 20 weeks?
FENTON: I think the best thing to think about is it’s about the size of maybe a quarter to a half dollar.
END OF INTERVIEW
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