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Mumsnet Discussions: Disabled parents : scoliosis (4 messages)
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Contact the poster Contact mumsnet about this post By kerrymac1976 on Thu 20-Nov-08 20:08:46
i had my scan today today and got told my baby has scoliosis and Encephalocele and i have been told i have 2 decisions to make either abort or go full term but my baby could die i need any advise from any parents out there who have been through a similar situation please help
Contact the poster See this person's profile Contact mumsnet about this post By simpson on Thu 20-Nov-08 22:33:27
Am so so so sorry for you.

Have no experience of this but am bumping so someone who can help more comes along.
Contact the poster Contact mumsnet about this post By hugglebug on Sun 23-Nov-08 21:48:22
I can only comment on the scoliosis I;m afraid. I have scoliosis myself and it actually runs in my family albeit in every other generation (meaning my baby is fine but my grand children are likely to have it). There are varying degrees of scoliosis and while it is uncomfortable to the point of agony for some it can be relieved with surgery, pain relief and physio. I looked up Encephalocele and realise it is obviously a very serious condition. What ever you decide, I hope you get all the support you need. All the best.
Contact the poster Contact mumsnet about this post By NKbba37feX11e14718b2c on Mon 08-Dec-08 02:37:34
My baby was also diagnosed with an enecephalocele at 16 weeks. We had our 18 week scan two weeks ago, and while it of course was still there, there was very little actual brain matter in the encephalocele.

I assume you want advice on whether to terminate. That, I don't think, is advice anybody can give you - it's a personal decision that you and your partner will have to make, because you will be the ones who will have to live with it.

I can tell you my and my husband's thoughts, though. We recognize the severity of the situation, and the range of possible outcomes - from death in utero, shortly after birth, or a lifetime of disabilities. But terminating isn't an option to us, simply because we would always wonder "what if?" We would always wonder if perhaps her disabilities wouldn't have been so bad, and that would have been something we could not bear. We recognize that we may have to care for her the rest of our lives, but it is something we feel ready to do, both financially and emotionally (it also helps, I admit, that part of my work involves Medicaid planning, so I know the types of resources that are available to severely disabled and how to access them).

I should also say that, I am pregnant with triplets, so any procedure to terminate would put my other daughters at risk. And so our decision is a bit easier - we don't have the luxury even contemplating termination, because it is something we could do only as a last resort, if her condition is threatening the lives of our other daughters.

Feel free to e-mail me if you wish - amy.maio@alaska.com


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