Myelomeningocele Screening & Outcomes After Open Fetal Surgery

Myelomeningocele (MMC), one of the most severe forms of spina bifida, is a condition where a baby’s spinal cord fails to close during development. The Management of Myelomeningocele Study (MOMS) trial began in 2003 to determine if surgery to treat MMC before a baby was born was better than surgery after birth. The study goal was to enroll 200 women, but the trial was stopped early in December 2010 because of the clear evidence presented for the benefits of prenatal surgery.

At the SSM Health Cardinal Glennon St. Louis Fetal Care Institute, we made open fetal surgery a viable option for some mothers and their babies who have been prenatally diagnosed with MMC. All mothers referred to the Cardinal Glennon St. Louis Fetal Care Institute for this surgery will meet with a maternal fetal medicine specialist, neurosurgeon, neonatologist, anesthesiologist, social worker, spina bifida team member, urologist, and a Cardinal Glennon St. Louis Fetal Care Institute nurse. An ultrasound, MRI and fetal echocardiogram will be done to properly evaluate your baby in-utero.

Study Details

Information for this study is collected through prenatal evaluation of the mother and baby for possible fetal surgery and throughout their care. The information obtained can be placed into two databases (1) the Cardinal Glennon St. Louis Fetal Care Institute database, and (2) the North American Fetal Therapy Network (NAFTnet) Fetal Myelomeningocele Repair Registry. NAFTnet collects information throughout North America about babies and children with spina bifida who have had surgery before or after birth. This resource provided our fetal surgeons with invaluable information, allowing us to better help moms and their babies.

At the Cardinal Glennon St. Louis Fetal Care Institute, if you choose to participate in the study, you have the option to have your information stored in one or both of the two registries. Your personal information will not be recorded, rather you will be identified by a study ID number and your information will be combined with thousands of others with the same condition.

Those who participate in the study will continue to help us and other centers in North America to learn more about this fetal surgery, allowing us to continually improve outcomes for others in the future.

Myelomeningocele Repair with Increased BMI

There are a number of protocols as well as inclusion and exclusion criteria in place for fetal surgery to maximize the potential for a positive outcome. Since the start of the MOMS trial, mothers who were heavier (those with a Body Mass Index (BMI) greater than 34.9) did not meet the criteria for fetal surgery. The Cardinal Glennon St. Louis Fetal Care Institute is now conducting a study of mothers with a BMI of 35 - 40, who qualify and elect to have fetal MMC repair surgery.

The surgery, performed on both mother and baby, is the same as that of mothers who have a BMI less than 35. The Cardinal Glennon St. Louis Fetal Care Institute plans to perform surgery on ten mothers and babies who fit these criteria.

Those who participate in the study will help the team at the Cardinal Glennon St. Louis Fetal Care Institute, learn more about the how surgery outcomes and potential complications may differ on mothers with a higher BMI. Our hope is that this information  helps us to improve outcomes for other mothers in the future.

For more information, email our research team, or call us at 314-268-4037 (toll-free: 877-776-3385).