Physician Toolkit: Management of Myelomeningocele
Prenatal surgery to Myelomeningocele Experience at CHOP More than 2,712Patients referred to the CFDT for suspected Myelomeningocele (MMC) More than 1,507Patients evaluated for suspected MMC 399Fetal surgeries for MMC493Babies with MMC delivered in our Special Delivery Unit since 2008 All numbers except deliveries reflect data from 1995-December 2020 at Children's Hospital of Philadelphia. treat myelomeningocele (MMC), the most severe form of spina bifida, is one of the most exciting developments in the history of treatment for birth defects. It is also an extremely complex procedure that requires extensive experience to perform successfully. Mothers who choose fetal surgery require the most expert and carefully coordinated care from the time of diagnosis, for the spina bifida surgery itself, and through the baby's delivery and care afterwards.
A quick look at our patient volumes and fetal MMC repair outcomes proves the Center is a valued resource for evaluation and treatment of myelomeningocele. Members of our team were not only pioneers in fetal surgery, they developed the prenatal spina bifida surgery procedure and have the greatest collective experience in the world.
Specialists at the Center partner with you to provide a seamless continuum of care, discuss the diagnosis and treatment options, offer suggestions for follow-up if fetal surgery is required, and remain available for consultation for the remainder of the pregnancy as part of the patient's ongoing prenatal management team.
We welcome your questions, comments and referrals.
Resources for professionals
To better partner with you, the Center has created a number of professional-focused resources about myelomeningocele and spina bifida, treatment options before and after birth, as well as offer you resources you can share with your patients.
Referral guidelines for myelomeningocele
Comprehensive individual evaluation of each pregnancy is essential to determine whether fetal surgery for myelomeningocele is appropriate. To help you gain a clearer understanding about when prenatal surgery may be appropriate and when it is not recommended for the health of mother and/or fetus, we have developed referral guidelines for fetal surgery for myelomeningocele.
If you'd like to refer a patient to the Center for Fetal Diagnosis and Treatment for a full evaluation or discuss a case with a member of our team, please contact us at 1-800-IN-UTERO (1-800-468-8376).
Flip chart: A guide to specialized fetal MMC surgical repair
This flip chart for healthcare professionals provides an overview of spina bifida, facts about myelomeningocele, guidelines for when fetal surgery is a treatment option, and details about the actual prenatal repair, along with recovery time, delivery and follow up care.
You can contact us to request copies of this resource for use in your office, or download the flip chart.
N. Scott Adzick, MD, director of the Center for Fetal Diagnosis and Treatment at CHOP, was lead author on the landmark Management of Myelomeningocele Study (MOMS), which proved the efficacy of prenatal spina bifida repair versus postnatal repair. "A Randomized Trial of Prenatal verses Postnatal Repair of Myelomeningocele" (reported in the New England Journal of Medicine), chronicles the study conducted from 2003 to 2010 at CHOP and two other centers, and establishes fetal surgery for spina bifida as a new standard of care.
The study found prenatal repair resulted in:
- Reversal of the hindbrain herniation component of the Chiari II malformation
- Reduced need for ventricular shunting to relieve hydrocephalus
- Reduced incidence or severity of potentially devastating neurologic effects
The long-awaited results validated the work pioneered by the Center team over more than 20 years; developing the prenatal repair technique, conducting extensive tests in animal models and then cautiously applying the therapy in select patients.
The MOMS trial continues to monitor the original participating families. This unique opportunity to continue to directly compare the long-term effects of prenatal versus postnatal repair will answer many questions about spina bifida, ultimately helping both clinicians and patients make an informed choice about the treatment options available.
A decade later, follow ups to the landmark 2011 study add to a growing body of research affirming the benefits of fetal surgery for spina bifida:
- In January 2020, new findings were reported in Pediatrics showing significant physical and emotional benefits in school-age children who had prenatal surgery for spina bifida.
- January 2021, additional findings reported in JAMA Pediatrics show that children who had prenatal repair also have better self-care skills and are more independent up to 10 years later.
Staff of the Center for Fetal Diagnosis and Treatment have written extensively about fetal surgery for spina bifida and have established a long legacy of research about myelomeningocele. Visit our publications page for an extensive list of fetal surgery for spina bifida publications »
In Utero Insights newsletter
The myelomeningocele-focused edition of In Utero Insights, the Center's newsletter to the professional community, focused on the landmark MOMS trial that found prenatal repair of myelomeningocele can substantially improve outcomes. This newsletter is also available in Spanish (en Español).
A 27-year-old woman was referred for assessment of a 23-week gestation fetus with thoracolumbosacral spina bifida. The lesion was first detected on a 20-week ultrasound performed because of an elevated maternal serum alpha-fetoprotein level.
Resources you can share with patients
Fast facts: What you need to know about prenatal spina bifida repair
Fetal repair of myelomeningocele is offered as a standard of care at Children’s Hospital of Philadelphia.
- Explore our information about fetal surgery for MMC to find a high-level summary of the MOMS trial, the prenatal procedure and how the Center for Fetal Diagnosis and Treatment has revolutionized treatment for children with myelomeningocele.
- View a slideshow illustrating the stages of spina bifida surgery during pregnancy
In this video, center team members explain the prenatal myelomeningocele repair procedure and the comprehensive, multidisciplinary care provided for both mother and baby at Children's Hospital of Philadelphia. Created for clinicians and patients, it's essential information about this important treatment option. Send a link of the video to a patient.