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PubMed This is a summary of 16 peer-reviewed journal articles Updated
Fetal Medicine · Spina Bifida

What to Ask Your Fetal Surgeon About Spina Bifida Repair

At a Glance

When choosing a spina bifida surgical team, always ask about their specific surgical volume and complication rates. Comparing their outcomes to standard benchmarks and ensuring they offer multidisciplinary, long-term care helps ensure the best possible results for you and your baby.

In this answer

3 sections

01

Questions About Experience and Surgical Volume

02

Questions About Outcomes and Benchmarks

03

Questions About Multidisciplinary Long-Term Care

Receiving a spina bifida diagnosis is overwhelming, and choosing the right care team for your baby’s open spinal dysraphism (myelomeningocele) repair is one of the most critical decisions you will make. It can be helpful to bring a support person to take notes during your consultations. Whether you are planning for fetal surgery (before birth) or postnatal surgery (after birth), you have the right to ask detailed questions about a surgeon’s experience, their outcomes, and their long-term care plans.

Questions About Experience and Surgical Volume

While there is no universally mandated minimum number of surgeries a center must perform [1][2], research shows that a surgeon’s experience and the volume of cases a center handles significantly influence patient outcomes [3][4]. You want an experienced team that performs these repairs regularly and has the right hospital resources. Ask your prospective surgeon:

  • “How many open spinal dysraphism closures do you and this hospital perform each year?”
  • “Of those surgeries, how many are fetal repairs and how many are postnatal repairs?”
  • “How many of these specific procedures have you personally performed as the lead surgeon?”
  • “Does this hospital have a Level IV Neonatal Intensive Care Unit (NICU) to handle complex care immediately after birth?”

Questions About Outcomes and Benchmarks

When evaluating a center’s success rates, it helps to know the benchmarks set by the MOMS trial (the landmark study on fetal surgery). That trial showed that fetal surgery reduced the need for a ventriculoperitoneal shunt (a tube placed in the brain to drain excess fluid) by 12 months of age to 40%, compared to 82% for babies who had postnatal surgery [5][6].

It is essential to ask how a center’s specific success and complication rates compare to these numbers:

  • For fetal surgery: “What is your center’s specific rate of babies needing a shunt placed by their first birthday?”
  • For fetal surgery: “What is your center’s rate of maternal complications, such as premature birth or uterine dehiscence (the surgical scar on the uterus tearing or opening)?” [6][7]
  • For postnatal surgery: “What is your rate of complications following postnatal closure, such as cerebrospinal fluid (CSF) leaks or wound healing issues?”
  • “Are you utilizing or researching minimally invasive (fetoscopic) approaches to reduce maternal risks, and what are your outcomes with those?” [8][9]

Questions About Multidisciplinary Long-Term Care

Spina bifida requires lifelong care that extends far beyond the initial surgical repair [10][11]. Successful management requires a coordinated approach across many different medical specialties [12]. Research shows that specialized, multidisciplinary care centers improve care coordination, reduce complications, and improve overall quality of life [13][14]. Ask your team about their follow-up care:

  • “Do you have a dedicated, multidisciplinary spina bifida clinic to handle my child’s care as they grow up?”
  • “Are specialists like urologists, orthopedic surgeons, and physical therapists integrated into this centralized clinic?” [15][16]
  • “How do you monitor for common long-term complications, such as a tethered spinal cord (where the spinal cord becomes attached to the spinal canal and stretches)?”
  • “Does your center participate in the National Spina Bifida Patient Registry (NSBPR) to track long-term outcomes and improve care?”
  • “Can your clinic connect our family with mental health resources or other families who have gone through this surgery at your center?”

Common questions in this guide

How many spina bifida surgeries should a hospital perform?
While there is no universally mandated minimum number, research shows that centers with higher surgical volumes tend to have better outcomes. It is important to ask your prospective surgeon exactly how many fetal and postnatal spina bifida repairs they personally perform each year.
What is the standard benchmark for needing a shunt after spina bifida surgery?
The landmark MOMS trial showed that about 40 percent of babies who received fetal surgery before birth needed a shunt by 12 months of age. In contrast, 82 percent of babies who received postnatal surgery after birth required a shunt in their first year.
What are the maternal risks of fetal spina bifida surgery?
Fetal surgery carries specific maternal risks, including premature birth and uterine dehiscence, which occurs when the surgical scar on the uterus opens or tears. Always ask your prospective care team about their specific rates for these maternal complications.
Why is a multidisciplinary spina bifida clinic important?
Spina bifida requires lifelong care from multiple specialists, including urologists, orthopedic surgeons, and physical therapists. A centralized, multidisciplinary clinic improves care coordination, lowers complication rates, and enhances your child's overall quality of life.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.What are your center's specific rates for shunt placement by age one for both fetal and postnatal repairs?
  2. 2.How many of these specific procedures have you personally performed as the lead surgeon?
  3. 3.Can you explain the specific maternal risks I face if we choose fetal surgery, and how your team manages them?
  4. 4.What is the rate of wound healing complications and cerebrospinal fluid (CSF) leaks for postnatal closures at this hospital?
  5. 5.Do you have a dedicated multidisciplinary spina bifida clinic, and what is the transition plan from the NICU to that clinic?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

Related questions

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References

References (16)
  1. 1

    A study to assess global availability of fetal surgery for myelomeningocele.

    Sacco A, Simpson L, Deprest J, David AL

    Prenatal diagnosis 2018; (38(13)):1020-1027 doi:10.1002/pd.5383.

    PMID: 30378145
  2. 2

    Current Selection Criteria and Perioperative Therapy Used for Fetal Myelomeningocele Surgery.

    Moise KJ, Moldenhauer JS, Bennett KA, et al.

    Obstetrics and gynecology 2016; (127(3)):593-597 doi:10.1097/AOG.0000000000001296.

    PMID: 26855109
  3. 3

    Perinatal outcomes after open fetal surgery for myelomeningocele repair: a retrospective cohort study.

    Moron AF, Barbosa MM, Milani H, et al.

    BJOG : an international journal of obstetrics and gynaecology 2018; (125(10)):1280-1286 doi:10.1111/1471-0528.15312.

    PMID: 29878531
  4. 4

    Fetal Surgery for Open Spina Bifida in Canada: Initial Results.

    Pruthi V, Abbasi N, Ryan G, et al.

    Journal of obstetrics and gynaecology Canada : JOGC = Journal d'obstetrique et gynecologie du Canada : JOGC 2021; (43(6)):733-739.e1 doi:10.1016/j.jogc.2020.10.014.

    PMID: 33227419
  5. 5

    Fetal surgery for spina bifida.

    Dewan MC, Wellons JC

    Journal of neurosurgery. Pediatrics 2019; (24(2)):105-114.

    PMID: 31370010
  6. 6

    Fetal surgery for myelomeningocele: After the Management of Myelomeningocele Study (MOMS).

    Moldenhauer JS, Adzick NS

    Seminars in fetal & neonatal medicine 2017; (22(6)):360-366 doi:10.1016/j.siny.2017.08.004.

    PMID: 29031539
  7. 7

    The first experience with 16 open microsurgical fetal surgeries for myelomeningocele in Germany.

    El Damaty A, Elsässer M, Pfeifer U, et al.

    European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society 2025; (55()):79-86 doi:10.1016/j.ejpn.2025.03.009.

    PMID: 40154034
  8. 8

    Safety and Effectiveness of Fetal Myelomeningocele Repair: Case Series Analysis Using an Exteriorized Uterus and a Fetoscopic Approach.

    Miranda ML, Ximenes R, Andrade KC, et al.

    Fetal diagnosis and therapy 2025; (52(5)):521-531 doi:10.1159/000546549.

    PMID: 40435982
  9. 9

    Fetoscopic Open Neural Tube Defect Repair: Development and Refinement of a Two-Port, Carbon Dioxide Insufflation Technique.

    Belfort MA, Whitehead WE, Shamshirsaz AA, et al.

    Obstetrics and gynecology 2017; (129(4)):734-743 doi:10.1097/AOG.0000000000001941.

    PMID: 28277363
  10. 10

    Prenatal Repair of Spina Bifida: A 2-Center Experience with Open Intrauterine Neurosurgery in Chile.

    Sepulveda W, Corral E, Alcalde JL, et al.

    Fetal diagnosis and therapy 2020; (47(12)):873-881 doi:10.1159/000509242.

    PMID: 32937625
  11. 11

    Impact on family and parental stress of prenatal vs postnatal repair of myelomeningocele.

    Antiel RM, Adzick NS, Thom EA, et al.

    American journal of obstetrics and gynecology 2016; (215(4)):522.e1-6.

    PMID: 27263997
  12. 12

    Out-of-pocket and indirect expenditure of spina bifida and hydrocephalus patients admitted for inpatient treatment and follow-up at two university-affiliated hospitals in Ethiopia.

    Yesehak B, Zewdie K, Bizuneh Y, et al.

    Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery 2024; (40(12)):4137-4144 doi:10.1007/s00381-024-06647-7.

    PMID: 39375213
  13. 13

    Multidisciplinary spina bifida clinic: the Chicago experience.

    Shlobin NA, Yerkes EB, Swaroop VT, et al.

    Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery 2022; (38(9)):1675-1681 doi:10.1007/s00381-022-05594-5.

    PMID: 35870009
  14. 14

    Neural tube defects in Uganda: follow-up outcomes from a national referral hospital.

    Xu LW, Vaca SD, He JQ, et al.

    Neurosurgical focus 2018; (45(4)):E9.

    PMID: 30269577
  15. 15

    Hydrocephalus in Spina Bifida.

    Blount JP, Maleknia P, Hopson BD, et al.

    Neurology India 2021; (69(Supplement)):S367-S371 doi:10.4103/0028-3886.332247.

    PMID: 35102990
  16. 16

    Long-term neuroimaging and neurological outcome of fetal spina bifida aperta after postnatal surgical repair.

    Sileo FG, Pateisky P, Curado J, et al.

    Ultrasound in obstetrics & gynecology : the official journal of the International Society of Ultrasound in Obstetrics and Gynecology 2019; (53(3)):309-313 doi:10.1002/uog.20215.

    PMID: 30663167

This guide provides suggested questions for evaluating a spina bifida care team and is for educational purposes only. It does not replace professional medical advice from your maternal-fetal medicine specialist or neurosurgeon.

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