Recently Diagnosed

[Jen&Kevin]

I am 20 weeks pregnant. Last week, the doctor's office called and told me that my AFP was very high. I went in Monday for an ultrasound and the doctor confirmed that the baby has SB. He noticed the lemon sign and a "bulge" in the spinal cord. Is this definitive for SB? I had so many questions and he really couldn't answer them because he said that he rarely sees this. He made me an appointment for us for next week with a specialist. I was wondering if there was any way to predict the severity of the SB based on ultrasound. Maybe someone familiar with SB can give me some answers. Thanks!
Jennifer

[LisaJoy]

Hi, Jennifer & Kevin --

It sounds like your baby has the definitive markers for sb -- ultrasound is pretty effective at identifying sb. However, it is NOT very reliable for predicting severity. In all likelihood, you will be given a "worst case scenario", but you need to remember that they simply cannot know how severely your baby will be affected until he is born. Most of the parents on this site received a far worse prognosis than actually occurred. One thing you absolutely should do, in addition to meeting with the high risk fetal medicine specialist (I assume that's who your ob is sending you to) -- you should meet with a pediatric neurosurgeon who has experience treating children with sb. They will give you a much more balanced outlook -- the perinatologists/fetal medicine/ob-gyn types seem to be, as a whole, unreasonably pessimistic about sb.

Read through some of the "recently diagnosed" posts to get a feel for the kinds of experiences parents have had. Also, many of us on this forum actually have sb!

Keep in mind that most babies with sb do just fine. Most will be "community ambulators" or skilled wheelchair users, most will have normal to above normal intelligence, most will be able to graduate from high school, go to college, get jobs, get married, just like everyone else. In other words, spina bifida, even when accompanied by hydrocephalus, is quite compatible with a high quality of life.

It is also important to be aware that a very small percentage of cases (and these are RARE) can have bad outcomes, especially if there are multiple severe defects (I mean in addition to sb and hydrocephalus, and maybe clubfeet). By severe, I mean things like anencephaly (absent brain) or absent kidneys.

I'm Lisa -- 44, lipomyelomeningocele (a "closed" form of sb), walk with one brace & crutch, college history professor.

By the way, if you don't mind sharing your approximate location, others might be able to recommend doctors, hospitals, etc.

Feel free to ask anything you want -- we are here for you!

[LisaJoy]

This is a good thread:

http://www.spinabifidaconnection.com/showthread.php?t=447

[dsmith]

My daughter has SB at L3-L4. We did not know that she had SB until after her birth. One suggestion is looking into inter uterine surgery at Vanderbilt Hospital in Tennessee. Look into the pros and cons.

Also, please consider banking the babies cord blood. We banked our daughters blood as a precautionary measure and we were glad that we did when we found out that she had SB. Our hope is that the stem cells from the cord blood will help to improve our daughters function in the future. If you do bank the blood, please let me know as I am trying to find those that have banked the child or a siblings blood. lamanaii@hotmail.com

Best of Luck!