Spina bifida care at Mayo Clinic

Doctor with baby

Mayo Clinic's pediatric experts provide the highest quality care for children with spina bifida and any complications.

Your Mayo Clinic care team

At Mayo Clinic, you can expect the best care from our multispecialty team of pediatric experts on spina bifida. Depending on age and individual needs, the team of experts may include pediatric or adult specialists in neurosurgery, neurology, urology, orthopedic surgery, radiology, physical medicine and rehabilitation, pediatric rehabilitation, clinical genomics, maternal and fetal medicine, pediatric surgery and others.

Mayo Clinic has significant expertise and experience in caring for children and adults who have spina bifida, treating more than 290 people annually.

Advanced diagnosis and treatment: Spina bifida surgery before birth

When a spina bifida diagnosis is made before birth, the mother will need a comprehensive evaluation to determine treatment options. Mayo Clinic experts may offer in utero spina bifida surgery. This complex procedure involves a team from several Mayo Clinic specialties, including pediatric neurosurgeons, specialists in obstetrics and gynecology, and maternal and fetal medicine specialists.

Using ultrasound as a guide, surgeons expose the pregnant mother's uterus surgically, open the uterus, repair the baby's spinal cord and close the mother's incision. When done by the experienced specialists at Mayo Clinic, prenatal surgery typically results in significantly less disability for the child with spina bifida.

In utero spina bifida surgery

Through new innovations, Mayo Clinic surgeons are repairing spina bifida prior to birth with the use of a fetoscope. This vastly improves the life of the baby and enables the mother to deliver vaginally and closer to term.

Surgery prior to birth can often be offered for severe congenital anomalies such as spina bifida. Congenital anomalies are typically diagnosed around 20 weeks during the recommended fetal anatomy scan. Once the condition is diagnosed, a multidisciplinary center can offer the best treatment options, with various specialists coming together using the latest technology and techniques. Early intervention is extremely important, and involving a specialized team sooner helps teams plan and prepare for treatment options.

Mayo Clinic specializes in minimally invasive approaches that improve overall outcomes. Using a multidisciplinary approach, experts for both the mother and the child come together. These include experts in in maternal and fetal medicine, obstetricians, cardiologists, neurologists, and others.

Fetoscopic spina bifida repair

Narrator: During fetoscopic surgical repair, an incision is made in the abdomen to expose the uterus. Using ultrasound, the location of the placenta is identified to determine safe locations for insertion of the endoscopic trocars. The baby's back is then positioned facing up, and gas or air is added to the uterus to create a uterine environment that's half gas and half amniotic fluid. This allows the baby to float in the amniotic fluid with its back exposed for the procedure.

Two ports are inserted through the wall of the uterus. Through a tiny telescope, the spina bifida defect is visualized. The membrane of the cyst is sharply cut, and the neural placode is released from the surrounding tissue. Then the dura mater and all layers of the muscle and skin are closed over the top of the neural elements, resulting in a watertight seal. The gas is replaced by fluid to maintain the amniotic fluid volume. Finally, the instruments and ports are removed, and the maternal abdomen is closed to complete the procedure.

Fetoscopic surgery on fetus Spina bifida fetoscopic surgery

Fetal surgeons access the uterus through an incision in the mother's abdomen, repair the spina bifida defect and close the opening in the baby's back and the mother's incision.

Doctor viewing computer image of the spine

To aid in treatment planning and decisions, a model of the patient's spine can be generated by computer medical imaging and then printed on a 3D printer.

Spina Bifida Clinic

At Mayo's campus in Rochester, Minnesota, the Spina Bifida Clinic coordinates care for children and teenagers with complex conditions of the spine, spinal cord, brain, bowel and bladder. When they reach adulthood, they can transition to a Mayo health care team for adults with spina bifida.

You and your child will likely see many experts over the course of the first visit. This multispecialty team approach results in a personalized treatment plan and patient-centered care. This plan may include surgery, medication, therapy, special equipment and follow-up appointments with specialists.

Expertise and rankings

Girl walking on crutches

Mayo Clinic is consistently recognized by external organizations for providing outstanding care. These endorsements reinforce our commitment to provide expert, compassionate care to both children and adults.

Nationally recognized expertise

Mayo Clinic in Rochester, Minn., and Mayo Clinic in Jacksonville, Fla., rank among the Best Hospitals for neurology and neurosurgery in the U.S. News & World Report Best Hospitals rankings. Mayo Clinic in Phoenix/Scottsdale, Ariz., is ranked high-performing for neurology and neurosurgery by U.S. News & World Report.

Mayo Clinic in Rochester, Minn., and Mayo Clinic in Phoenix/Scottsdale, Ariz., are ranked among the Best Hospitals for orthopedics by U.S. News & World Report. Mayo Clinic in Jacksonville, Fla., is ranked highly performing for orthopedics. Mayo Clinic also ranks among the Best Children's Hospitals for orthopedics.

Mayo Clinic in Rochester, Minn., is ranked No. 1 for urology in the U.S. News & World Report Best Hospitals rankings. Mayo Clinic in Phoenix/Scottsdale, Ariz., and Mayo Clinic in Jacksonville, Fla., are ranked among the Best Hospitals in the nation for urology by U.S. News & World Report. Mayo Clinic also ranks among the Best Children's Hospitals for urology.

Pediatric experts

Mayo Clinic's pediatric experts provide the highest quality care for children with spina bifida and any complications. This experienced multispecialty team includes specialists from pediatric neurosurgery, pediatric neurology, pediatric urology, pediatric orthopedic surgery, pediatric rehabilitation and other areas.

Children who need hospital care receive treatment at Mayo Eugenio Litta Children's Hospital, consistently recognized as one of the best children's hospitals in the nation.

Fetal and maternal care in Minnesota

The Mayo Clinic offers a coordinated, multispecialty team approach to help women experiencing high-risk pregnancies. Mayo Clinic experts specializing in fetal and maternal care use imaging techniques prenatally to accurately diagnose babies with birth defects, such as spina bifida, and then connect parents with the necessary specialists.

This team of physicians and nurses helps coordinate any necessary intrauterine treatment, plans the route and timing of delivery, and provides a smooth care transition for the newborn infant.

Fetoscopic surgery for spina bifida

Edward Ahn, M.D., Pediatric Neurosurgery, Mayo Clinic Children's Center: The traditional treatment for spina bifida is we generally fix the spine problem after the baby's born, usually within the first one or two days after the baby is born. But since the studies have shown that prenatal surgery is beneficial, we have an approach where the uterus is opened, and then we can fix the spinal defect while the baby's in their second trimester. And that, of course, shows the benefits.

But again, the risks behind that are risks of uterine rupture, requiring a Cesarean section afterward, and the risk of premature labor. With a fetoscope, what we're doing now is we can access the uterus and access the fetus by looking through scopes.

And we can, similarly, repair the spine defect just through the scopes itself. And this is involving simply placing ports within the uterus rather than opening the uterus up.

And through the ports, what we do is we visualize on the screen the spine defect. And we repair the defect through tiny instruments that go through the scope itself. And that way we leave very little impact on the uterus.

Studies have shown that prenatal surgery for spina bifida is beneficial. It's proven to improve the infant's outcome with regard to being able to walk and also with their outcomes with regard to hydrocephalus and development of Chiari malformations. So that's been proven.

And the development that we want to talk about is the use of fetoscopic surgery. The main disadvantage to a prenatal surgery is the risk of having a premature delivery. And with a less invasive fetoscopic approach, we can get closer to that target of a full-term delivery and make the situation safer for both the baby and the mother.

Rodrigo Ruano, M.D., Maternal and Fetal Medicine, Mayo Clinic Children's Center: The main objective is to reduce the obstetrical risks. So that means reduce the chance of opening the uterus, and that means that we want to reduce the risk of uterine rupture. Contractions-- so those patients, they will be able to have contractions. They will be able to labor, so they will be able to have vaginal delivery.

And our goal is to have those patients deliver close to term. So we hope to improve, also, the gestation age that they are going to deliver those babies.

This procedure needs to be done, of course, in a sterile way, operating room. Usually we have general anesthesia because we need to relax the uterus, even though we are doing less aggressive under fetoscopic view. But we need to relax the uterus, so we do that under general anesthesia.

And then we expose the uterus, so we do a laparotomy. We open the maternal belly, the abdomen. And then we expose the uterus. Instead of making an incision in the uterus, we are just going to puncture, make a tiny, tiny incision, just to put the scope inside.

And then we find the best way to avoid the placenta. So we need to be away from the placenta. And then we position the baby, the fetus. We put the head down, usually. So you hold the head. And then we put the back up.

And then it's interesting because the technique was developed in a way, that we developed together, that we put half gas and half water inside the uterus, so we expand it a little bit with gas. Why? Because inside the gas, we can visualize better the spina bifida defect.

So we put the back of the baby up, and we put some gas inside the uterus. So that means that the baby is going to be facing down, head inside the water, or the amniotic fluid. But their back is going to be upward, and then we are going to have the gas. And then we introduce the ports.

Dr. Ahn: So through the ports, we can introduce a scope and look at the baby's back. The issue with the baby's back is that there's an opening. So it's not covered by skin. It's not covered by bone. Instead, we see the exposed spinal cord and nerves. So that's, by definition, the spina bifida defect.

So with the scope, we have that visualized. And then our job is then to free the spinal cord and the nerves from a cyst membrane that surrounds it and is attached to it, and then to completely release it from all those attachments.

And then the spinal cord and nerves is then tucked back into where it should be, the spinal canal. And then our job is then to close layers of skin over top of the opening. And then, by doing that, we're not letting any more of the spinal fluid, the nerves, come outside of the defect.

So all that's done through the scope, using sutures that are tied with visualizing under the scope. And by then, we should have a single incision that can heal as the fetus is developing.

I think that the family should have the option to this less invasive approach for several reasons. Through a less invasive approach, through scopes, effectively, should be a reason to come here.

Make the referral early. We're in a time window where we restrict our interventions for the fetal surgery for spina bifida to be somewhere between 19 and 26 weeks. But it has to be within that window.

So often when the diagnosis is made, you really have to get a lot of steps in the process in place for the surgery to occur. Many team members involved, and the planning really starts rapidly afterwards. So the earlier we know about it, the better.

Dr. Ruano: Patients carrying babies with spina bifida who are seeking for evaluation at another place, there's no risk for traveling or flying unless they have some other problems, for example, preterm contractions, if they rupture the membranes, of course.

So of course, the communication between the referring provider and the center is very important because we need to see the initial condition of the patient. But if the patient is fine, is doing well, it's just the baby's concern, then there is no risk for traveling.

Dr. Ahn: The culture of Mayo Clinic is collaboration, so you have experts in each of their own disciplines working together. So in this specific scenario, you have a mother who's pregnant with a fetus diagnosed with a neurological condition. And you think about all the different specialists that you need involved.

You need a specialist for the mother. You need a specialist for the fetus, who has the neurological condition. You need a specialist to provide the anesthesia for the mother, and then someone to provide the anesthesia for the fetus.

And then you have to think about who's going to care for the baby overall after the baby's born, and then the long-term needs of the baby. I mean, think about how many fields that you're talking about.

And so one provider cannot manage all of this. And I think it's very fitting for Mayo Clinic, who has experts in all these different fields and encourages the collaboration between all the different caretakers to come together. And there's no solo player here. We're all working together as a team. And I think this is a perfect example of how it works.

You know, I've seen the perspective, as someone who takes care of children with spina bifida, go through the challenges of trying to live a normal childhood and the challenges of being someone with a spine abnormality with weakness of your legs and not being able to have normal bladder function and potentially having hydrocephalus, dealing with depending upon a shunt for normal function. And that ends up becoming like a lifeline for the children.

And it is something that we believe in, that if we can improve any of these things for the child, then we need to do everything we can to make it possible for the families. So if a baby's born with spina bifida, that child will live, but will live, potentially, a completely different life if they didn't have the intervention. But they will live. And so it's not a life or death situation where we're intervening.

However, it is a completely different life in the sense of, for example, not having hydrocephalus that affects the brain or being able to use your legs better, if you have the fetal intervention, or not having a brainstem problem. All those things are, of course, crucial for the neurological development of the child.

And you know, when you ask why do we enjoy doing fetal surgery, it's the fact that I like interacting with the families. I like interacting with the expectant mother. And when they're faced with the decision about doing this surgery, they could, A, choose the traditional path of having the baby. The baby undergoes all these interventions and potentially has a completely different life.

Or the mother then decides to have the surgery done by Dr. Ruano and myself. And when the mothers then decide, well, if there's a potential benefit to my baby who's not even born yet and I can do something about it and have surgery done on myself, then, hands down, we find that the mothers will say yes.

They will make that decision without a question. And I always step back and realize the bravery of the family, the mother, the father, and everybody involved, that they're going to put their lives literally on the line for the outcome of the baby.

NICU and NICU Follow-up Clinic

Mayo Clinic's Newborn Intensive Care Unit (NICU) specializes in family-centered care of premature and critically ill newborn infants. Families are welcome at the baby's bedside and will find many support spaces throughout the unit, such as family waiting areas and rooms, parent-sleep rooms and breast-feeding rooms.

Mayo's NICU Follow-up Clinic ensures continuity of quality care after the baby's discharge from the NICU.

Continuity of care

Mayo Clinic provides lifelong care for spina bifida, so your child can transition to adult care for follow-up to ensure continued quality care.

Locations, travel and lodging

Mayo Clinic has major campuses in Phoenix and Scottsdale, Arizona; Jacksonville, Florida; and Rochester, Minnesota. The Mayo Clinic Health System has dozens of locations in several states.

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Costs and insurance

Mayo Clinic works with hundreds of insurance companies and is an in-network provider for millions of people.

In most cases, Mayo Clinic doesn't require a physician referral. Some insurers require referrals, or may have additional requirements for certain medical care. All appointments are prioritized on the basis of medical need.

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Dec. 17, 2019


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