Meeting with Fetal Medicine Specialist

[Jen&Kevin]

My husband and I met with a fetal medicine specialist this morning in Birmingham. I am 20weeks and 5days pregnant. He confirmed what our OB/GYN suspected. The baby does in fact have SB -- a meningomyelocele. The baby also has hydrocephalus. The opening in the spine is from the lower lumbar region to the sacral region and is 1.6 cm. (The crown to rump length of the baby is 16-17cm.) The specialist wasn't really able to tell us a prognosis and I was wondering if anyone on this site could help us. We were just curious if the baby would have paralysis of the lower extremities and bladder impairment. Any help would be greatly appreciated. Thank you.
Jennifer

[LisaJoy]

Jen -- Your best bet to get the answers you are looking for is to visit a spina bifida clinic and meet with a pediatric neurosurgeon experienced in treating kids with sb. Only people who treat these kids are really qualified to give any kind of prognosis. And if they are honest, they will tell you these kids are full of surprises!

A low-lumbar sacral lesion is generally consistent with being able to walk, maybe with braces. Most people with sb have some degree of bladder impairment, even if it is the ONLY thing that doesn't work. But rest assured, this can be dealt with in a lot of different ways, depending on how it manifests. Most low-lesion folks can manage with catheterizing and medication, but there's a large range of options.

Likewise, hydrocephalus is manageable; most people with it have normal intelligence.

But here's the deal -- there is no way to be sure exactly how your baby will be affected. We are all very different from each other. I walked without assistance until my late-30s; now I use a brace and one crutch. I cath and take Ditropan for bladder problems, but have no bowel incontinence. I have no hydro.

Everyone on this forum can describe a different constellation of sb characteristics. But one thing we mostly share in common is a good quality of life. If you raise your child to be independent, s/he will be, no matter what his/her disabilities.

Can't remember where you are -- did you go to Birmingham UK or Birmingham Alabama (or some other Birmingham?)? UAB probably has pediatric neurosurgeons and an sb clinic. If you are in Alabama, you might want to consider contacting the MOMS fetal surgery clinical trial at Vanderbilt in Nashville (www.spinabifidamoms.com), if that is something you would consider. Their website has good info, in any case.

Good luck and keep us posted! Read around in the forum and let us know if you have questions about anything at all.

[Jen&Kevin]

Thank you so much for the info. We are in Huntsville, AL and went to UAB. Unfortunately we were not able to meet with a neurosurgeon yesterday but I have a friend in Orlando who is a neurosurgeon and he was very helpful. We meet with our doctor again today. Thanks again.
Jen

[LisaJoy]

Good luck and keep us posted.