Anyone experienced with Spina Bifida?

[gillian.s]

Hi everyone, I found out yesterday at my dating scan that my baby has spina bifida, it is unusual to be found this early so I guess I am lucky to have found out so soon. It is in the lumbar section but don't know which one(s) yet and probably won't until about 18-20 weeks when I get my anatomy scan done. So far there are no issues with baby's brain, heart or feet which means it is not looking like baby has any other complications from it but the consultant did say that they wouldn't always show this early. I will be getting testing done about 16 weeks to test for downs syndrome and edwards syndrome which fingers crossed will give me the all clear (not that I would love baby any less is there was something else detected). It is quite a lot to take in seeing as I am only 23 and had been taking folic acid before I got pregnant. My last pregnancy ended in a MMC so I am starting to think myself or my partner might have a problem with our genetics. Baby will have to get surgery around day 2 or day 3 of life.

I am just looking to see if I can find people that were in a similar position and have come out the other side. Can your child walk, if so is it aided or unaided? What was the extent of the damage to the organs? But most importantly, how is your child? I worry if my baby goes to school and needs a catheter that they could be made fun of. It is all little worries I have but I just want the best for my baby.

My consultant told me that a lot of people in my position would chose to go to the UK to terminate the pregnancy (it is illegal in Ireland) but that just wouldn't be for me. There is a good chance that my baby can live an almost completely normal life so I don't see why I would end it.

Any information that you can give would be great

 

[chickenlegs]

I don't have experience as a mother, but I currently catheterise an 8 year old boy with spina bifida in school. He walks with a walker and wears a nappy. He is genuinely just one of the kids at school. He does exactly the same as the others, just sometimes with a bit more support. No one knows he wears a nappy and at lunchtime he just tells the others that he has to have help to go to the toilet when he is catheterised. I have no idea what the future holds when he goes to secondary school but I know that at present his disability is not considered a big deal in any way and he is 100% accepted. Hope that helps.

 

[SoBlessedMama]

Hi mama, I just wanted to offer hugs and say you're handling this with a level of grace and strength that is really admirable. Like the PP, I don't have any experience with SB as a mom, but several years ago I was blessed to have a sweet little girl in my class at school who had it. She did have some secondary issues as far as classwork was concerned (these may have just been related to learning disabilities, and not necessarily tied to the SB.) She was also in a wheelchair, and was not able to walk. However, she is sweet, funny, absolutely beautiful, and had loads of friends at school.

You're absolutely right that your baby can lead an amazing life in spite of any struggles he/she may face. I pray each upcoming report you get has the best possible results, and holds many good things in store for you and your sweet little one!

 

[Nibblenic]

Tegans Mama Im not sure how much she comes on here anymore. Might be worth a PM they have Tegan who has SB and is now 6 or 7. I have them on facebook I think Tiggy is just brilliant but its not always easy them all.