Physician Toolkit: Management of Myelomeningocele

Prenatal surgery to Myelomeningocele Experience at CHOP More than 1,725 Patients referred to the CFDT for suspected Myelomeningocele (MMC) More than 940 Patients evaluated for suspected MMC 212 Fetal surgeries for MMC All numbers except deliveries reflect data from 1995-September 2014 at The 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 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.

Fetal Surgery for Myelomeningocele: A Guide to Specialized Fetal MMC Surgical Repair

This flipchart 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.

A dynamic PDF of the guide is compatible with iPhone, iPad and Android devices. You can also download the flipchart.

Research

A spina bifida surgery breakthrough, reported in the New England Journal of Medicine, is providing new possibilities to families faced with this devastating condition.

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. The article, "A Randomized Trial of Prenatal verses Postnatal Repair of Myelomeningocele," 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 validate 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.

Today, the second phase of MOMS is underway as the trial’s 183 families continue to be monitored by participating clinical sites to determine the long-term effects of prenatal repair of myelomeningocele. This important stage of follow-up work, continuing through November 2016, will provide valuable insight into the lasting outcomes of prenatal repair versus standard postnatal repair in children 6 to 9 years of age.

This unique opportunity 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.

More details about the MOMS trial »

Publications

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 »

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). 

Online CME

The Center for Fetal Diagnosis and Treatment offers an online continuing medical education module on Fetal Myelomeningocele Repair: Tribulations and Trials. Course highlights include:

  • Reviewing the natural history of myelomeningocele diagnosed before birth
  • Identifying the indications for fetal myelomeningocele repair
  • Discussing the results from the Management of Myelomeningocele Study (MOMS)

The CME is available for 1.0 AMA PRA Category 1 CreditTM for physicians and is offered free of charge. The course is also available for CE credit for nursing professionals. Visit our online CME page for course details, accreditation information and to register.

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)

Case study

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.

Read this case study about successful fetal surgery for spina bifida repair.

Resources you can share with patients 

Condition content

The Center has detailed, diagnosis-specific information about spina bifida and prenatal repair of spina bifida, as well as other fetal anomalies, written for families.

Fast facts: What you need to know about prenatal spina bifida repair

Fetal repair of myelomeningocele is now offered as a standard of care at The 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.

Educational video: Birth of a Breakthrough

In our DVD, Birth of a Breakthrough, Center team members explain the prenatal myelomeningocele repair procedure and the comprehensive, multidisciplinary care provided for both mother and baby at The Children's Hospital of Philadelphia. Created for clinicians and patients, it's essential information about this important treatment advance. Contact us to request a copy of the DVD.

Reviewed on October 31, 2013