Please help us understand, sacal spina bifida diagnosed at 28w

[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'm sorry I don't know much about SB, other than my cousin has it. Are there any SB charities that you can contact? Hope someone comes along soon who can help you. Wish doctors were more informative, you must be in such a state right now, although its good they said it might not have an impact. Sending hugs.

CAn't really offer any advice other than to speak to someone from ASBAH - they may have a local support worker in your area who you can meet in person.
(DS has hydrocephalus which is why we met them).

i'm not sure on here how many dcs have spina bifida, but i know there were quite a few whose parents used 'special kids in the uk' forum.

dr google is always tricky - he told me that children with spastic quadraplegia never walk.

they suspected sb with dd1 at birth and whisked her off for lots of checks. she has a deep sacral dimple but no problems.

hopefully you can find people with similar potential dx on skinuk. it must be a huge shock, hope you are all ok x

My younger sister has Spina Bifida Occulta, which hasn't caused her any problems, other than some IBS type bowel issues, but I know that Occulta is the mildest form of SB.

I do know is that hers is low on the spine and she has what appears to be a blue birthmark across the area and apparently a sort of dimple or depression as well.

My elder sister also has the birthmark and dimple, but was never diagnosed, although from consultations following our younger sister's diagnosis at birth, the general feeling was that she has the same thing. She also has bowel problems, but hasn't been affected in any other way.

Could the notes about what was suspected have been written before this scan, based on previous scans and now they've been able to identify it as a less disabling type of sb? Would that explain the discrepancy between what they are saying and what it says in the notes?

There is a list of SB support groups here which might help.

The new ASBAH website is here.

My dd1 has a deep sacral dimple too, with no issues relating to it, many people go through their lives without realising they have it.

My eldest has Spina Biffida Occulta..as does my brother.. both are absolutely fine..
More severe forms do cause difficulties ..but it varies SO much that google is NOT your friend..

My son's OT has a severe form.. however as a full time w/c user it hasn't prevented him from having a good career:)

Thank you so much for you replies.

I am writing this for the sake of anyone else in our position.
Our daughter is now 4 months old. The terrifying diagnosis we were given by a series of medical professionals have turned out to be far from the truth.

She is fine, she did not need an operation within 24 hours of being born (as we were told) she kicks her legs and has normal bowel and bladder function for her age! She may yet develop problems due to her spinal cord being tethered to the inside of the wee bump on her right bumcheek. She may yet need an operation. It may yet turn out tthat she can't feel when she needs to pee and poo. She may still have to an opeartion that will leave her with problems only time will tell.

The health care professionals involved with us all seemed to feel that the best thing they could do was paint the bleakest picture so that we'd be incredibly grateful if was better than that.

Even what they say must be taken with a pinch of salt!!!!!

If anyone reading this has been told the same thing,
take heart,
try not to let it ruin your pregnancy.

I love our daughter more than i ever knew it was possible love, I can't bear to think that they would have aborted her because of her "disability"

I would also like to pass on my mum's invaluable wisdom on the subject
"Being told in pregnancy that something is wrong with your baby is devastating but you can have a perfectly healthy wee baby who falls out of a tree later in life and becomes paraplegic, it doesn't matter, they'll always be perfect to you"

Hadn't seen your original post but lovely to hear your dd has confounded medical expectations and is doing so well.

Pignut - Your mum is obviously a very wise person and I'm sure she has been a great support to you both in the latter stages of your pregnancy and since your DD was born. Thank goodness you didn't opt for a late termination on the strength of what the Doctors told you.
I hope that your DD continues to defy the prognosis and doesn't need surgery in the future.
My DD was born with severe disabilities but we love her just the same. I always think it must be much harder to have a healthy baby who then becomes ill/disabled later in life - as your mum says, it can happen at any time.
Thank you for posting this in case anyone else finds themselves in the same position as you were.

Hello Pignut and congratulations on the arrival of your beautiful girl.

Thank you so much for coming back and updating us, it's lovely to hear that your daughter is doing so well.

As bigbluebus said you mum is indeed a very wise woman.