Spina Bifida diagnosed at 30 weeks please help

[whatcantheydo]

Have name changed for anonymity. My sister in law she is currently 30 weeks pregnant, and after having four scans earlier in her pregnancy (last one at 22 weeks, all abroad and done privately) which were all normal, she returned to the UK recently and a routine scan last week showed that the baby had an abnormality. They were referred for a fetal medicine scan on Monday, but decided to get a private scan straight away which confirmed spina bifida - myelomeningocele which is the most serious form.

They were also called up afterwards by a consultant saying that they had the option of termination even at this late stage due to the likelihood of disability. They are now considering this but will wait for the NHS fetal medicine scan before deciding. They have been told about the risk of paralysis below the level of the defect and incontinence afterwards.

Please can you give any advice/experiences that might be of help to them. They are obviously devastated. Experiences of spina bifida positve and negative would be really helpful. Thanks.

ragged.... What...?! What is that supposed to mean? The OP started this thread a long time ago. But still interesting to read people's experiences. No need to be obscure, weird or nasty though.

Oh does zombie mean it's old? I thought it was some weird snipe at people with disabilities...

It's just so people don't invest themselves in advising someone who dealt with their problem yrs ago.

I see. Very sensible! If a little freaky.

I haven't read all the replies, so I don't know if this will help, but just to let you know about my own personal experience of spina bifida. My brother (now 36) has spina bifida. When he was born in 1978 there was no way of telling while my mum was pregnant if there was anything wrong with the baby. They only found out after his birth. My parents were told that he wouldn't live longer than 2 years. Evidently, he is still here, leading a very full life and is getting married in August. He had to endure 29 operations throughout his childhood, but he did so with such a positive outlook. He was amazing. I was always, and still am, in awe of him. He is one of my closest friends and I don't know where any of us would be without him.

My brother was lucky insofar as his spina bifida wasn't severe. My mum did a lot of work with severely-affected children when my brother was little and there was a big difference in the level of care that was needed. My brother was incontinent for most of his childhood, but with help, he managed to overcome that. He can walk, he works as a journalist and has a great life. It is different if the child is severely disabled, but there is a lot of help out there nowadays, that I think they would find a way to cope. If you'd like anymore info, please feel free to pm me x

I have just seen that this is a zombie thread - I should have read all the replies! Oh well, hopefully, I'll have helped someone.