Info on Spina Bifida - Where should I look?

egankn · May 2011

My MW called today, our chance is 1 in 11 and I'm pretty upset. They hope to get us in for a higher ultrasound by friday but we have to drive to a bigger city an hour away so I don't have an appt yet.

I'm trying to learn more before we go, can someone point me in the right direction please?

dadonet · May 2011

let me start by saying I am so sorry you have this fear now. A week ago we found out our baby does have Spina Bifida. Its terrifying! Do not google unless you want to be scared. I found on babycenter.com search Spina Bifida kids. Those ladies have been so helpful and honest. Also I would look into Children's hospital of Philadelphia there spina bifida treatment. Any questions please feel free to ask me. Your in my thoughts and prayers hoping you get a result than we did.

ellewoodsSC · May 2011

Sorry to hear, hope you get some answers at your ultrasound. I think there can be various degrees of changes though that happen with spina bifida so without knowing the full extent of what may be going on, things may seem quite overwhelming right now.

The spina bifida association is a good place to start:

https://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2642297/k.5F7C/Spina_Bifida_Association.htm

T&Ps your way!

egankn · May 2011

dadonet:
let me start by saying I am so sorry you have this fear now. A week ago we found out our baby does have Spina Bifida. Its terrifying! Do not google unless you want to be scared. I found on babycenter.com search Spina Bifida kids. Those ladies have been so helpful and honest. Also I would look into Children's hospital of Philadelphia there spina bifida treatment. Any questions please feel free to ask me. Your in my thoughts and prayers hoping you get a result than we did.

thank you so much! I'm so sorry for your news...it has to be hard!

Do you mind telling me did they say for sure from an ultrasound or did you have to have an amnio? I want to be prepared for the appt.

egankn · May 2011

ellewoodsSC:
Sorry to hear, hope you get some answers at your ultrasound. I think there can be various degrees of changes though that happen with spina bifida so without knowing the full extent of what may be going on, things may seem quite overwhelming right now.
The spina bifida association is a good place to start:
https://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2642297/k.5F7C/Spina_Bifida_Association.htm
T&Ps your way!

Thank you for the info and the T&P, I could use both!!

dadonet · May 2011

They could tell by ultrasound we seen the lesion in her spine and the fluid on her brain. We are trying to have surgery in utero to correct so I HAD to have an amnio done to rule out other problems and just for further proof. My amnio went just fine hear her heart 2 days later she was not affected at all. If we were waiting til after birth to try and fix the problem I dont think I would have gotten the amnio. But we really really want the in utero so we had to take our chances. Do research on all your options before you make a decision. time is a factor in somethings so just push for appointments as soon as possible. We found out at 18 weeks and have surgery scheduled for 20 weeks 2 day if were accepted.

rkto · May 2011

I am pretty sure you cant diagnose spina bifida from an amnio. It only detects chromosomal abnormalities.

Good luck with the rest of your tests.

Julie822 · May 2011

I am so sorry you are dealing with this worry. I had higher results from my blood work, so I talked to a lot of people. While it is good to be educated, don't give up hope because I talked to someone whose risk was 1 in 4, and her baby had no neural tube defect at all!

I did what you aren't supposed to do and just googled; although, I stuck to Mayo Clinic type sites from the results. Yes, it was scary, but it was easier for me to know everything.

dadonet · May 2011

well yes and no...amnio is required, not only to rule out chromosome abnormalities but if the lesion caused by the spina bifida is open which would be leaking spinal fluid in to the amniotic fluid. this will not only confirm if your baby has spina bifida but also how severe it truly is and will determine where the doctors will take your condition next.

egankn · May 2011

dadonet:
well yes and no...amnio is required, not only to rule out chromosome abnormalities but if the lesion caused by the spina bifida is open which would be leaking spinal fluid in to the amniotic fluid. this will not only confirm if your baby has spina bifida but also how severe it truly is and will determine where the doctors will take your condition next.

Thank you, you've been very helpful! I wish you tons of luck in the surgery and hope it goes well! I hope to get in this week for my level II ultrasound so we can go from there....

MrsNash37212 · May 2011

I'm so sorry you're going through this - it must be terrifying. I'm not much help, but I recently read an article about the spina bifida surgery program at Vanderbilt University (where it was pioneered) and the great outcomes they have had when the surgery is done in utero. I'm not sure where you live, but people come from all over the country for the surgeries and they have an amazing support network for people who come from out of town. Good luck with your results.

Mrs. Mo · May 2011

I honestly have no advice but {{{hugs}}} to you any anyone else who is dealing with this.

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