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New here. Spina bifida
Hey ladies Im 18 weeks pregnant with my first went for my anatomy scan found out my daughter has severe spina bifida. My Dh and I are both young and have no family history of any birth defects. I'm just kind of lost. If any have are are dealing with spina bifida will you please share your story with me. Today my Dr. told me I will not make it to full term and my baby will never walk. I dont know what to do or expect. I'm sorry for the rambling i'm just confused.
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Re: New here. Spina bifida
Hi,
First, I want to tell you how sorry I am you are dealing with this. I know (as do many here) how terrifying it is to get this kind of news during what should be an only ecstatic time of your life.
My son doesn't have spina bifida, but my friend's son does. May I ask, have you gone to a perinatologist? Sometimes a specialist who deals w/high risk pregnancies can have better information about a specific diagnosis.
Melissa
So sorry you are going through this. My son does not have Spina Bifida, but we did find out about his very serious heart defect at the 20 week ultrasound. It is very scary! I would agree with PP and wait to see a perinatologist and/or specialist before you get ahead of yourself. I don't think a regular doc is qualified to say that your LO will not make it full term and that he/she will never walk. There are varying degrees to Spina Bifida and I would only trust a specialist.
It is a very confusing time when you get news like this. I hope you are able to get answers sooner than later. I will be keeping you and your family in my thoughts and prayers.
I personally have not been affected by Spina Bifida for this pregnancy however it is highly prevalent in my family so I was well prepared by generations of women about what to expect and how to cope. And I just wanted to confirm what a PP said, there are varying forms of spina bifida....two that occur outside of the body. One is an open neural tube defect and one is closed. Unfortunately Open Neural Tube defects are devasting and the babies do not often live long (but by long, I mean maybe a year or so...I had an "uncle" who died at 6 months old). The Closed Neural Tube defect, although outside of the body and can cause significant issues such as not being able to walk, aren't as severe as open defects and the babies will live but often require wheelchairs and daily care of the defect. Just out of curiosity...did you get the quad/sequential screen done...the blood work that assesses the liklihood of an open neural tube defect by measuring the AFP levels in your blood? That would be a good indicator of an open or closed defect and may be a good place for you to start if you haven't had that bloodwork done...