Spina Bifida - Salt Lake City,UT

Wishing you a healthy baby and some peace with the testing...it is so stressful.
I don't have experience as a parent in this arena, but I did have a close friend in school who had spina bifida. You'd never know it. The only "disability" he had was that he was unable to skate backwards (he loved to play hockey). I say, "disability" in quotes, because I can't even ice skate forward! LOL He occasionally had some backaches, but no more than any other hockey player I knew.

((HUGS)) You will get through this! My middle son was diagnosed before birth with a complex congenital heart defect. He has 2 chambers instead of 4. Anyways, I cried a lot before he was born. I was not sad for me; I was sad for him. I wanted him to have the best life possible and hated that he was going to have pain, surgeries, etc. He is 3 now and is amazing! He's had 2 surgeries and needs one more. He still only has 1/2 a heart, but it doesn't slow him down. Regardless of the outcome, your child will be amazing!

I'm not sure what test you had done, but I was told that the quad screen can have a lot of false positives. I'm having it drawn tomorrow and the doctor told me not to freak out if it comes back with positive results. Try to relax. I know what it is like to worry like crazy, I was a basket case before the Nuchal fold test but it turned out okay. Good luck.

I used to take care of a little boy with spina biffida twenty some odd years ago. (I know that's not the same as if he were my own because obviously I wasn't as affected emotionally as a parent would be, so I'm not pretending to know what it's like to be a parent of a child with spina biffida.) But, I wanted to say that I do have very fond memories of Tommy. He was the sweetest little kid you could meet. He was so happy, and laughed very easily. I don't remember him ever being in a bad mood. He had no behavior issues what so ever, and was really just a joy to be around. I just wanted to put that out there because that's not the kind of information you find when you start reading about spina biffida.
Very best wishes and congratulations on your baby!

Just wanted to add to the support! My SIL has spina bifida, she is paralyzed from the waist down but can walk with crutches. I often forget that she is 'disabled' because she has done everything she wanted to and is very independent. Of course some surgeries and health issues along the way, but nothing she couldn't handle.

I will say that, despite not liking my in-laws at all, they did an amazing job with her. They never treated her like she had limitations, so she never accepted limitations later on.

Good luck and I hope all goes well!

From the NIH website:
There are four types of spina bifida: occulta, closed neural tube defects, meningocele, and myelomeningocele.

Occulta is the mildest and most common form in which one or more vertebrae are malformed. The name “occulta,” which means “hidden,” indicates that the malformation, or opening in the spine, is covered by a layer of skin. This form of spina bifida rarely causes disability or symptoms.

Closed neural tube defects make up the second type of spina bifida. This form consists of a diverse group of spinal defects in which the spinal cord is marked by a malformation of fat, bone, or membranes. In some patients there are few or no symptoms; in others the malformation causes incomplete paralysis with urinary and bowel dysfunction.

In the third type, meningocele, the meninges protrude from the spinal opening, and the malformation may or may not be covered by a layer of skin. Some patients with meningocele may have few or no symptoms while others may experience symptoms similar to closed neural tube defects.

Myelomeningocele, the fourth form, is the most severe and occurs when the spinal cord is exposed through the opening in the spine, resulting in partial or complete paralysis of the parts of the body below the spinal opening. The paralysis may be so severe that the affected individual is unable to walk and may have urinary and bowel dysfunction.

I had that test done with my first pregnancy, and it came back that I was at a higher risk for down syndrome. We went and got an extra ultrasound, and the results were inconclusive. They were talking about doing all these extra tests, but we decided not to. When I had the baby, everything was just fine. She was a nice, healthy baby. With my second pregnancy, we didn't opt to do the test because it added undue stress. He was healthy as could be too. I hope that everything works out! :) Good luck!

I know nothing about spinal bifidia but I do know that my pre-screening results for Downs were high. I was told that she had a 1 in 16 chance of being Downs. She is perfectly healthy in every way. Try not to worry although that is much easier said than done.

Best wishes!

First of all - try not to worry. Second - if your child does have spina bifida there are so many resources to help now. One of my cousins has spina bifida. He has the most severe kind - paralized from the waist down. But his life is amazing ! He is a college grad, lives in Chicago, is married, and they just had their first child. He works full time. He lived on his own prior to getting married. But he also had an amazing network of family to support him growing up. His parents were very involved in his therapy and in the spina bifida organizations. Just remember that if this is the case it may be rough going but it can be gotten through.

Hi Julie,

I pray your baby is healthy. Try not to stress yourself...your OB will have to do more tests in order to rule it out though. Just try to relax & pray! However if the tests continue to come back positive start lookong for resources agencies and organizations that can help you.

God Bless & I am praying for you and your family. Please let us know the outcome.

My brother and SIL have an 18-month-old little girl with spina bifida. They were actually fortunate enough to qualify to be part of a study at UCSF, where my SIL underwent prenatal surgery (I think she was about 22 or 23 weeks along) to help fix the lesion on the baby's back. Then they stitched her back up and she was pregnant for another 10 weeks or so (so the baby was born around 34 weeks).

It was an incredibly difficult ordeal for them (imagine having the equivalent of a C-section but then being pregnant again for another two months), but the results have been fantastic. The little girl hasn't needed any surgery since birth, no shunt in her brain, and while she is delayed a little and has to be catheterized (apparently about 80% of adults with spina bifida need this anyway), she is now able to bear weight on her legs and can crawl pretty well. She can also pull herself up to standing and even cruise along furniture. This would probably not be possible if she hadn't had the surgery when she did, because it stopped the progression of the lesion and halted any brain fluid leakage. Only time will tell how she is in other areas, like cognitive development and speech. She has therapy quite often in their home--physical, cognitive, etc. Oh, and she's the most adorable little girl! All smiles and giggles.

You can look up this study by googling "fetal surgery for spina bifida." They published the results in February, I think, after ending the study early because the results were so overwhelming that fetal surgery was a huge benefit--if you qualify for this surgery, I highly urge you to do it. If not, there are so many resources out there that will help you and your child. I hope it was a false positive, but whatever happens, you can do it.