Please Help, Spina Bifida diagnosed at 28 weeks.

[PignutSalamander]

Having just been for a scan, we have been told that our baby has spina bifida in the sacrum (tailbone) and that because it is so low down in the spine it should not affect any of the babys functions however it says in our notes suspected Myelomeningocele, which having looked it up on net is listed as the most severe form. I'm confused (among other things!) and I'm trying to find out what I can about it via ASBAH but have not found anything that specifically relates. Can anyone tell me if they have experience of SB in a similar place, what the long term affects are and if there was any problems with the birth. Many thanks.

i think your best bet would be to make an app with the mw /dr etc as soon as poss to talk these things over with them. hugs and good luck

Spook is right, you need to get specific to you advice.

This seems to be saying that Myelomeningocele varies a lot in severity, and that every case is unique. Also that what Myelomeningocele means for the child depends a lot on where it is located in the spine.

If it's at the bottom of the spine, that's the best place to have it where it should have the least-serious effects, but I'm afraid I don't know anything about surgery or birth as my field didn't cover that.

I hope you can talk to a doctor soon.

Again just a positive story- my friend was born with it and had an operation and you would never know so I think it comes in differing degrees and it is a physical disability even when in a severe degree rather than a mental one if that makes sense.
Hope it all works out for you.

Ok you need to get back to the medical team and get some more information about what is known and what is likely after birth. I would expect for example that baby will be checked by the paediatrician straight away so you may need to stay in hospital longer than you were expecting and so on. If the baby needs intervention staraight away it may be that you or discharged whilst they are still a patient. This is all stuff that you can find out about now and lay some plans for.
I think there are lots of positive stories out there about spina bifida. Twenty years ago I was at school with a lad whose mobility was affected but he was helped by varous interventions and had a full and NORMAL life neverthless. The outlook for your baby is likely to be very good. You just need to know a bit more so push for that.