The Latest in Medical and Surgical Treatment of Spina Bifida

Spina bifida affects about 1,400 babies born each year. Children with the most severe forms of the condition can have difficulty walking, bowel and bladder issues and many other complications. The multidisciplinary Spina Bifida Center at Lurie Children's provides comprehensive care for children and adolescents with spina bifida and other types of congenital spinal anomalies, from prenatal consultation through young adulthood. Dr. Robin Bowman leads the center. She is a neurosurgeon who sometimes performs a surgery on babies diagnosed with spina bifida, repairing the condition and improving the prognosis for the child. Learn more from Dr. Bowman in this episode. 

Featuring 

Robin M. Bowman, MD is the Director, Multidisciplinary Spina Bifida Center; Co-Director, Fetal Neurosurgery, The Chicago Institute for Fetal Health; Medical Director, Camp Independence; Member, Lurie Children's Surgical Foundation.  
 
Learn more about Robin M. Bowman, MD 

Topics Covered 

  • The multidisciplinary Spina Bifida Center at Ann and Robert H. Lurie Children's Hospital of Chicago provides comprehensive care for children and adolescents with spin bifida and other types of congenital spinal anomalies.  
  • Spina bifida affects about 1400 babies born each year. Children with the most severe forms of the condition can have difficulty walking, bowel and bladder issues and many other complications. 
  • Spina bifida is usually noted early in a patient’s pregnancy when they have a 20-week ultrasound. The ultrasound can reveal abnormalities in the brain as well as the open spina bifida defect in the lower spine region.
  • For many years, the treatment spina bifida, when diagnosed in utero, was to close the defect in the back after the baby was born. But in 2011, a study demonstrated improvement in some outcomes for children with open spina bifida when they went through surgery in utero, or before they were born. There is no cure for the condition, but the in utero surgical repair has been shown to help improve strength of lower extremities in children, among other benefits.
  • Today it is common to talk with a pregnant patient about whether she and the unborn baby are candidates for fetal surgery.
  • The in utero surgery involves opening the pregnant patient’s abdomen, exposing the uterus and, in a fetoscopic approach, putting in three, 3.5 millimeter ports into the uterus, and closing the baby’s back through those ports. The procedure is usually done around, 24 to 25 weeks gestation. 

Additional Resources 

Transcription

Dr. Robin Bowman: The biggest advancement has been the in utero closures of the open back. That being able to close that back early, in gestation, has a significant impact on the outcome of children with spina bifida. Spina bifida affects about 1400 babies born each year. Children with the most severe forms of the condition can have difficulty walking, bowel and bladder issues and many other complications. The multidisciplinary spina bifida center at Ann and Robert H. Lurie Children's Hospital of Chicago provides comprehensive care for children and adolescents with spin bifida and other types of congenital spinal anomalies. From prenatal consultation through young adulthood. 
 
Maggie McKay (Host): Our guest today is Dr. Robin Bowman, who leads the center. She is a neurosurgeon who sometimes performs a surgery on babies, diagnosed with spina bifida before they are even born helping improve the prognosis for the child. We talk with her today about the latest in spina bifida treatment and. This is Precision, Perspectives on Children's Surgery. I'm Maggie McKay. Welcome Dr. Bowman. It's a pleasure to have you here. Thank you for setting aside the time, we appreciate it. 
 
Dr. Robin Bowman: Oh, thank you for inviting me. It's a pleasure being here. 
 
Maggie McKay (Host): Will you please introduce yourself and tell us your specialty? 
 
Dr. Robin Bowman: I'm Robin Bowman. I'm a pediatric neurosurgeon here at Lurie Children's in Chicago and I'm director for our multidisciplinary spina bifida center and for fetal neurosurgery at The Chicago Institute for Fetal Health. 
 
Maggie McKay (Host): And to begin what exactly is spina bifida and how common is it? 
 
Dr. Robin Bowman: Spinal bifida is a complex congenital abnormality of the nervous system where the baby forms with the spinal cord open and exposed, which can lead to abnormalities related to that exposed spinal cord, as well as abnormalities throughout the nervous system. 
 
Maggie McKay (Host): And how common is it? 
 
Dr. Robin Bowman: It occurs approximately in 1400 to 1500 babies per year in the United States. 
 
Maggie McKay (Host): How does it affect the children who have it? 
 
Dr. Robin Bowman: For children with open spinal bifida, when they're forming in the womb very early in mother's pregnancy within the first three weeks of the pregnancy, the spinal cord itself never closes. And so you can envision the spinal cord comes down usually into the lower back region and kind of opens up like a flower. And the bottom of the spinal cord is attached to the skin, which puts the child at risk for weakness in the legs and in the bowel and bladder function. 
 
But I think you can probably imagine that it's not a normal or typical situation for the brain and spinal cord to be developing when the bottom into the spinal cord is exposed and leaking spinal fluid. So it sets the baby up for additional complications throughout the nervous system. In particular, they can have an increased risk of hydrocephalus or the fluid accumulating in the brain. 
 
And they also have something known as a chiari two, where the brain tissue in the back part of our brain almost hugs our brain stem, which can lead to abnormalities at times in some of our brain stem functions that have to do with our swallowing and breathing. 
 
Maggie McKay (Host): When is it normally diagnosed? 
 
Dr. Robin Bowman: Spina bifida is usually noted, early in the mother's pregnancy when she goes through her 20 week ultrasound, they can, pick up abnormalities in, the brain, as well as the open, defect in the lower spine region. 
 
Maggie McKay (Host): Well, The Chicago Institute for Fetal Health at Lurie Children's specializes in care for pregnant patients with complications. You are the co-director of fetal neurosurgery for that clinic. What is your role when patients with unborn babies have spina bifida and they come to you? 
 
Dr. Robin Bowman: We commonly meet the mothers around 20 weeks gestation and we sit down and we meet them as a team so that all of us are there. Myself and neurosurgery, my fetal team, my fetal surgeon, the maternal fetal medicine, our obstetricians are there as well as the neonatologists and our nursing care and social workers. 
 
And we sit down in the first time that we meet, we talk about just what is the disease and what is the possible impact of the disease on the child long term. And then at our subsequent meeting, which we call our phase two meeting, we talk about ways in which the care has changed through the years. That for many years the care was to close the back after the baby was born. 
 
Since 2011, when, a study demonstrated an improvement in some of the outcome measures for children with open spin bifida when they went through in utero surgery, we also talk about the possibility of the mother, if she and the baby are a candidate for fetal surgery. 
 
Maggie McKay (Host): Tell us more about the surgical options for these pregnant patients, with their unborn babies. What does that surgery look like and how does it help the patients? 
 
Dr Robin Bowman: So it's known as, in utero neurosurgery or fetal surgery, as you said. And there are certain inclusion and exclusion criteria for the mother and for the fetus. So it's not for every mother and it comes at risk. I think you can envision that it's not a typical situation … to go through surgery. 
 
And so it carries risk, to the mother and for preterm labor or premature rupture of membranes and other risk and carries the risk of preterm birth for the fetus. And so, the surgery itself is to open the mother's abdomen, expose the uterus and today, many of our, mothers opt for the fetoscopic approach where we put in three, three and a half millimeter ports, so little ports into the uterus, and then we work through those ports to close the baby's back. That's usually done around, 24 to 25 weeks gestation. 
 
Maggie McKay (Host): And how does that help the patients? Does that solve the problem or is there a surgical option once the baby's born? 
 
Dr. Robin Bowman: As we stress during our meetings with the family before the family decides if they want to proceed with fetal surgery, there's nothing that I'm able to offer them that cures this disease. That this is a disease that we manage, that we manage throughout the patient's lifetime. And this is, a management decision, that carries benefits, but also carries risk. 
 
The benefits that were reported in that randomized control trial back in 2011, showed that there's an improvement, statistically in the strength of the lower extremities for the children that go through in utero closure, that there's less of a risk for need of treatment, for hydrocephalus or that fluid that accumulates in the brain and an improvement in the chiari malformation. 
 
Which is where that cerebellum or that brain tissue that we all have in the back part of our brain kind of hugs our brain stem. With early closure of the back in a majority of children, that cerebellum kind of floats away from the brain stem and there's much more room in the back part. And so improvement in that chiari. 
 
Maggie McKay (Host): The spina bifida center is a multidisciplinary care team. What kind of specialists are on it? And how does it differ from other spina bifida centers for kids? 
 
Dr. Robin Bowman: As I stress with all of our families when I meet them initially at our phase one counseling is that there's not a single doctor that is, a specialist in all areas of taking care of a child with spina bifida. And so it requires a team and it requires a team that partners with the family and eventually with the patient in order to give that patient the best possible outcome. And although I'm the neurosurgeon. 
 
So I'm the doctor that takes care of closing the back and treating the hydrocephalus and perhaps treating that chiari, that snug compression of the brain stem, if a treatment would be needed. I partner and rely heavily upon, my other members of the spina bifida team, our urologist, our pediatric urologist, our pediatric orthopedic surgeons, our rehab medicine doctors, our developmental pediatrician, our neuropsychologists, our nursing team, our therapists, our social work. 
 
All of us work together to establish what the child's baseline is. And. Work with the family and eventually the child to maintain that baseline or help them improve throughout childhood. And so it takes all of us working together, to give the best possible care for a child with open Spina bifida. 
 
Maggie McKay (Host): And you mentioned that this is something they will have throughout their lifetime. So how long does the Lurie Children's spina bifida team follow a child condition? 
 
Dr. Robin Bowman: Our center is one of the longest running, clinics. nationally. We started back in the mid 1970s, with … Dr. McLone. And we are a strong, robust center today. We follow the children throughout childhood and into early adulthood. And are helping them then transition into adult care once they are established, have finished, their higher education, we help them, get established fully into adult care. 
 
Maggie McKay (Host): That must be so rewarding to see -- a baby grow up into adulthood that you helped improve their lives. 
 
Dr. Robin Bowman: It is rewarding. It's the best part of the job. There's nothing more heartwarming than knowing a little one with this disease that has some significant disabilities that are associated with it. And to see the different hurdles that the kids have to overcome, both them and their families, and then to see them achieve and graduate from college. It's very heartwarming. I'm very proud of my patients and their family. 
 
Maggie McKay (Host): When you look back 10, 20 years, Dr. Bowman, how has treatment for spina bifida advanced? 
 
Dr. Robin Bowman: The biggest advancement has been the in utero closures of the open back. That being able to close that back early, I gestation, has a significant impact on the outcome of children with spina bifida. At least what we know for the early outcome, into early childhood. And that's what we have seen in our children. That there's a significant improvement in the strength of the lower extremities, more so than, I would've ever predicted. 
 
There's less of a need for intervening, or for treatment of hydrocephalus and just a remarkable improvement in the imaging of their brain. Previously, prior to, in utero closures, I could look at an imaging of the brain of a child with open spina bifida and no one would have to tell me that they had open spina bifida. 
 
I knew it by their imaging. Today for many of my children that are closed in utero, I would not know that they have open spina bifida based upon their MRI. 
 
Maggie McKay (Host): Wow. Can you tell us about your background, how you became an expert in this condition? 
 
Dr. Robin Bowman: I went into neurosurgery because of my interest in pediatric neurosurgery. And fortunately very early in my residency, I encountered, patients with spin bifida and it intrigued me. it is a very tough disease. The most complex congenital abnormality of the nervous system that's compatible with long term survival. And I've always wanted to work with children. They're amazing. They're resilient. 
 
They take on anything and they just wanna play and have fun. I've always had an interest in pediatric neurosurgery, but it was really a spina bifida that was my primary interest. And it was the reason I came to Lurie, which was back in the late nineties was known as Children's Memorial here in Chicago. And I came here to train, because of, the spina bifida center here at Lurie. And I was fortunate enough to stay on and eventually become director of our program. 
 
Maggie McKay (Host): Is there a moment in the OR or clinic that really encapsulates why you do what you do? 
 
Dr. Robin Bowman: I think the thing that, just warms my heart and brings a smile to my face is when I see kids achieving, knowing that our team was able to help them, whether it's our fetal team. And I see a little baby who's had they gone to postnatal closure. They wouldn't have movement in their legs. And I see movement in their legs, in their hips, in their knees and in their feet. I love that, because I know that although we can't cure this disease, we're giving them the best possible chance. 
 
Or if I have one of my school age kids who even though they have disabilities, even though they may be walking with braces or have forearm crutches. They're out, they're achieving, they're participating in their dance or their cheerleading or their soccer or sled hockey is a big sport for many of the kids that I follow. Or recently a little, well, he's no longer little. I think of him as little. 
 
He was one of my original babies back in the late nineties. And he recently graduated from college. I'm so proud of them because this is a tough disease and I love when we, our team, is able to help the kids, overcome the burden of this disease and just get out there and be kids. 
 
Maggie McKay (Host): And can you share with us your research into pediatrics spina bifida with the Stanley Manne Children's Research Institute, how does it translate to patient? 
 
Dr. Robin Bowman: My research is clinically based, and we're very, focused on looking at our outcomes. We participate in the national Spina Bifida Patient Registry, which is a registry of patients, throughout the nation. And we're one of the larger centers where we have some of the most patient participating in the registry where we really wanna track the outcomes of the kids, and help standardize the care across the nation. 
 
Recently my spina bifida team just published, on the care of, children with myelomeningocele, which is a form of Spino bifida. it's a rare form. And we were able to publish the largest cohort of children treated in the us. And it's a terrific, report that shows that these children with this very complex abnormality of their spinal cord, can really do very well and have good strength long term. 
 
A majority of them have good control of their bowel and bladder. And it's, really a compliment to the whole team, because again, there's not a single one of us that can do it alone. We have to work together with the families, with the patient in order, to give them the best possible outcome. and so I think it really highlights that multidisciplinary care. The other area that we're working to, advance is in our fetal care. 
 
Some of the researchers are working to develop, some more, intensive, wireless, cardio, respiratory monitoring of the fetus. So there's a lot of work that's done on both ends. On improving the care, especially for the fetus and tracking our outcome long term. 
 
Maggie McKay (Host): You've mentioned your team, several times. Where do you turn to when you have questions about a case or a procedure? 
 
Dr. Robin Bowman: Well, of course, my Spina bifida team, I talk through things. From a neurosurgical perspective, I have terrific colleagues right here in Chicago. And, nationally, there's a small group of us, that are involved with the CDC in the registry study, and we're not bashful about emailing each other, calling each other, and talking through different cases. 
 
And so I rely heavily upon my small group of colleagues within pediatric neurosurgery who have a special interest in spina bifida have been very helpful, to me throughout the years. 
 
Maggie McKay (Host): That's great to have that network for each other. 
 
Dr. Robin Bowman: Absolutely. I always say, you know, if only the kids would come with “how to” books when I do this, you do that. Unfortunately they don't. 
 
Maggie McKay (Host): Wouldn't that be awesome. In closing, doctor, what gives you hope for babies and children with spina bifida? 
 
Dr. Robin Bowman: I am so pleased by the outcomes that I have seen for the children that have gone through the in utero neurosurgery that has really helped to lessen, the burden of this disease. And so I'm very, optimistic that we can continue to improve our surgical options and continue to improve the outcome for this disease. So even though we can't offer a cure for this disease. I do think that we can help lessen the burden of it. 
 
Maggie McKay (Host): Dr. Bowman, this has been so educational because I imagine it's a lot of information for a parent to take in when their child is diagnosed. So thank you for explaining what the latest in spina bifida treatment and care is at Lurie Children's. And thank you for your work. 
 
Dr. Robin Bowman: Thank you so much for inviting me today. 
 
Maggie McKay (Host): To learn more, visit Luriechildrens.org/spinabifida. Or to make an appointment call 1-800-KIDS DOC. If you found this podcast helpful, please share it on your social channels and check out the full podcast library for topics of interest to you. I'm your host, Maggie McKay. 



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