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Avatar universal

Anyone have any experience with spina bifida?

I had a blood test done to see if my child would have any abnormalities which came back positive for spina bifida. I had an ultrasound to see if maybe I got the dates wrong or anything and to see if the baby was growing as it should be. The ultrasound tech said that the baby looked fine to her, but that she wasn't a doctor and couldn't say for sure. I got a call from the doctor today saying they had scheduled me a level 2 ultrasound in early February. I'm just really scared that my child will be okay. I was reading online that with spina bifida sometimes causes stillbirth or the baby to die at an early age and also that I could of had a false positive. I just don't know what to think anymore. Sorry to sound so grim. I'm just really scared for my baby and was wondering if anyone had any information about it or had a child with spina bifida. I know not everything on the internet is true and just don't want to read too much into things. Any info would help. Thanks!
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Avatar universal
Y next door neighbour & best friend 17years old just had a gorgeous healthy lil boy with spina bifida & fluid on th brain ; he needed 2 major surgeries in th first 24hours of birth he had a shunt put in his head to drain th fluid from his brain & to our amazement he can move his legs :) so over all with all of hers & our positive thinking he is going to b just like any other child if anything he may have a small limp when he walks :) were so pleased he is so beautiful!!!
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Avatar universal
I live in New Zealand and have a little boy aged 3 who has Spina Bifida. I wouldn't be without him, he has enriched my life so much. Life is certainly a bit busier with frequent hospital appointments (quite normal in the early years) but it's all interesting stuff and a great learning opportunity. There are many great support groups if you get a positive diagnosis, depending on where you live. Just check out Facebook. The most important thing to remember is that a doctors diagnosis is not a definite 'this is how your baby's life is going to be' Our kids are renown for proving them wrong all the time, so listen to your heart, and feel your baby wriggling around. He or she is already halfway here, you just have to be still and do the rest and trust that everything will be ok. And trust me - it will. Look me up on FB http://www.****.*** Happy to support you.
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4562329 tn?1363818660
What drs doesnt say is that the blood test arent 100% so they may have to take fluid which there not 100%. I think the blood test are 90-95% chances of being right. Fluid is about 98-99%.
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Avatar universal
A level 2 ultrasound is a lil more extensive and lasts anywhere from 1-2 hours so they can get a better idea of what the lo is doing and how it is growing.
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Avatar universal
What us a level 2ultrasound or  different from a regular one
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Avatar universal
I have to cousins that have it ones 20 and the other is 26 they are just as smart and normal as us they just have problems with walking,or running !!
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4194487 tn?1370046144
Only experience i have with spina bifida is that i have spina bifida occulta, no where as bad as spina bifida, people can go there whole life without knowing.. hope your bub will turn out perfectly healthy, best wishes :) x

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Avatar universal
My mom's best friend was told her son would have spina bifida but turns out he just had scoliosis once he got older. Try not to worry so much. I'll be praying for your little one :)
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Avatar universal
Thank you for taking time out of your busy day to pray for me :) I appreciate it very much.  I don't mind in any way taking care of a special needs child. I just want my baby to live a long and fulfilled life. Thanks for putting my mind at ease a little. Just had a bad day today on the worrying front.
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Avatar universal
I had the blood with both of my pregnancies come back positive and my daughter is normal my son I havr had the level 2 ultrasound and that came back fine. It is just that your lo is at risk for it. Think positive and everything will be okay. I was told by the geneticist that some women just have a higher alpha feta protein but their babies are just fine like mine. When they do the ultrasound they will check for fetal movement and make sure the arms and legs and everything are moving okay. They will also take extensive look at the spine just to double check.
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1961938 tn?1398718101
My sister was diagnosed with it when she was in the womb. Through prayer she didn't end up being born with it.
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Avatar universal
I have a good friend with spina bifida and she is 23 and perfectly healthy. She has had a few things she has had to learn to accommodate but she is completely normal. Good luck :)
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Avatar universal
Sorry dont have any exp. But sending prayers your way that everything will b ok
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