How Will This Change My Pregnancy?

Aside from all the stress you may be feeling, your actual pregnancy won't change all that much. There is nothing that you will need to do differently in terms of what you eat, where you go or what you do.

What will (or should) change is the level of medical care you receive. Your OB/GYN should refer you to a Perinatologist. A Perinatologist specializes in high-risk pregnancies. They have much more experience in dealing with cases of Spina Bifida than your average OB. They should have access to more advanced equipment and will know what to look for.

More than anything else, the Perinatologist will use higher-tech ultrasounds (and take more of them) to watch your baby's development every step of the way. Your Peri. will keep you informed of how things appear to be progressing and may put you in touch with Neurologist as your due date approaches.

Keep in mind that thoughout this process, the Peri and Neuro can only give you best guesses in terms of your child's condition. Many SB parents will tell you that their well-meaning doctors gave them worst-case scenarios that didn't turn out to be accurate. Most SB parents will tell you that their child's condition was not as severe as their doctors predicted.

Your doctor will want to schedule a C-section approximately 7-10 days before your actual due date (children with SB are almost never delivered vaginally).

So aside from seeing a specialist, getting more ultrasounds and having a C-section, your pregnancy is (hard to believe) not that much different from anyone elses.

There is one study that you may look into called M.O.M.S. (Management of Myelomeningocele Study).

MOMS is a study currently underway to determine if fetal surgery for children with SB is an effective treatment.

50% of the women admitted to the study will have fetal surgery done during their pregnancy and 50% will not (chosen randomly). You may want to look into the program to see if it is something that you would like to participate in.