The "Management of Myelomeningocele Study" (or "MOMs Trial" for short) is an important study organized by the National Institutes of Health. It is evaluating whether it is better to close the spina bifida lesion (or "myelomeningocele") on a baby's back prenatally (in the womb) or postnatally (after birth).
Proponents of fetal surgery for spina bifida believe the prenatal closure may improve a child's mobility, reduce the risk of hydrocephalus, and improve overall quality of life. The answer is still unclear, so the medical community came together in 2002 to limit the pre-natal surgery (which involves significant risks to baby and mother) to three hospitals in the country which would be part of a randomized trial of 200 babies. The back-closure surgery used in both cases is identical -- only the timing changed. 100 babies will receive pre-natal surgery as part of the study, and the other 100 will receive postnatal closure, the current standard of care. If we were to participate, we would have been family #160.
The study is truly randomized, so candidates are evaluated and if they qualify agree to participate they are randomized into either the prenatal or postnatal group. The odds are 50/50 that a mom would undergo fetal surgery the following day. We qualified to participate in the study and Sada was fully prepared to endure the risks of the surgery if it would give Silas a chance at a higher qualify of life.What makes this decision so difficult is that the data from the first 150+ families is not available. It will not be published until the study is complete. It began in 2002 and is still ongoing.
Those days were among the longest of our lives, and deciding not to participate in the study was the hardest decision we have ever made. After extensive tests and imaging as part of the evaluation we came to believe that we had too much to lose from the fetal surgery and the risks associated with it.
As we were leaving, we visited Pier 39 in time for a fighter-jet flyover. The beautiful day in San Francisco masked the pain of our choice and our doubt about whether we made the right decision.
