Has anyone found out during pregnancy that their baby has Spina bifida and terminated their pregnancy? Or did you keep the baby and what was their quality of life like?
Has anyone found out during pregnancy that their baby has Spina bifida and terminated their pregnancy? Or did you keep the baby and what was their quality of life like?
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6 Replies
If you are going through this, I am very sorry :( Big hugs.
We opted that if there were any defects that could affect quality of life we would terminate the pregnancy. We are not financially nor emotionally equipped to deal with the challenges ourselves and we couldn't follow through with the pregnancy knowing there was something wrong. It can affect the quality of life in different ways depending on how severe the case is, sometimes it isn't that severe and they can manage just fine but other times they're paralysed or can't function properly down there.
The biggest thing for us when deciding was knowing the child would be mentally stable but not physically, would they resent us for keeping them when we knew there was something wrong?
Only you can decide what you think is right or wrong, don't let anyone tell you differently and make a decision based on what feels right to YOU.
There are huge variances in how effected someone is by Spina Bifida. Have you tried contacting your local Spina Bifida association?
As a parent who is carer for a now adult son with various disabilities the life lessons I've learnt are
1. There is no guarantee that a child born healthy won't develop a disease or disability through accident or illness at any time in there lives and we just have to deal with it.
2. You never know what you can handle until you do it
3. Wether you decide to keep or terminate you have to be prepared to wipe the what ifs/should haves/wish we'd from your vocabulary, because they will drive you insane
4. The world has changed dramatically for those with disabilities since my son was born 23 years ago. Funding does exist now (it's not perfect but it exists), we are far more enlightened (still a long way to go), but people with disabilities can lead happy fulfilling lives, the level of happiness often depends on attitude and isn't always related to severity of disability.
5. If someone told me today I was pregnant with a disabled child I still don't know what I'd do. I'm kind of glad I didn't know my son was disabled before he was born, I love him to bits and couldn't imagine life any other way.
Not me, but 45 years ago, before the advent of ultrasounds and the like my husband was born with spina bifida myelomeningocele. That's the worst one. He was rushed to a big hospital and operated on immediately to push the sac back into his back and close the hole. He was not expected to walk, to toilet independently or to have a very active life. He beat those odds and has a pretty good quality of life. Some bladder issues (minor), some lack of sensation in legs, feet and hands. Otherwise, pretty normal. My point being that you do not know what life will turn out like. If my MIL had known and heard the prognosis from doctors at a time when she could have terminated then she may have done and the doctors were wrong. I'm happy to talk about it further with you, if you like? PM me on Facebook if you like.
I had a guest writer on my blog a few years ago sharing her story about this.
https://bellace85.wordpress.com/tag/spina-bifida/
Hey Hun just sharing a friends personal experience
She was 27 weeks and found out bubs had SB she terminated after 2 tests to find out there was nothing wrong with the baby it was a heartbreaking loss to her and her family.
That's awful big hugs