Advice please - Spina bifida

[AppleOrchid]

I gave birth to DD on Friday. She has a hair patch at base of spine and midwife has advised we need ultra sound to check for spina bifida. I have tried to remain calm but am feeling sick with anxiety - not helped by total exhaustion and cracked nipples.

Baby is generally fairly hairy - has a thick head of dark hair, dark fuzz on ears etc. Hospital can't tell me when appointment will be at this stage and the waiting is driving me mad.

Feeling so worried... Please help!

Poor you. I don't have any really helpful advice but feel so sorry for you as the first weeks are hard enough.
My dd2 has a slight hairy patch at the base of her spine - she's now 9 months old and its fading, but it was very obvious at birth and she also had hairy ears!!! She doesn't any more.
No one ever mentioned a link between that and spina bifida. Did you have a scan at 20 weeks? I think spina bifida is often picked up then so if her spine looked normal then, hopefully it's nothing to worry about.
Re the cracked nipples, try squeezing some breast milk out after a feed and letting them air dry - it really helps.

congratulations on the birth :) i think they may be looking for this Spina Bifida Occulta, but try not to worry (even though you will) it can be nothing but better to be safe good look keep us posted x

Try not to worry, cracked nipples are enough to think about! I think it's faily normal, DS had little dark Wolfy ears, shoulders and a very defined dark hairy patch at he bottom of his back for ages. He's two now and covered in peachy fuzz.

Can't advise re SB but trying to reassure re hairy ones.

Hi there - please note that we have a dedicated website for any information relating to Spina Bifida @ www.shinecharity.org.uk - we also have a useful FB page that you can LIKE and share thoughts with www.facebook.com/ShineUKCharity - if YOU do use FB then it might also be worth you connecting with our Health Team either Gill: www.facebook.com/Shine.Gill.Yaz or Robin: www.facebook.com/Shine.Robin.Barnatt - Hope this helps?

I can't remember the exact stats, but I think something like 1 in 10 of us has a mild spina bifida (it just means a vertebra which hasn't completely closed off). In the vast majority of cases it doesn't cause problems. In my understanding, a severe spina bifida which will cause motor difficulties, etc., would probably have been picked up on scan, as blue22 said.

So even if it's that, I'd guess it's probably not going to be a big issue.

Congratulations on your new baby!
Hope you get some rest, and the nipples get less sore (I remember all too well how horrid cracked nipples are).

Congratulations on your dd

Just wanted to add that my niece has SB. She wasn't diagnosed until she was 6, and then had an operation to close the tiny hole over her spine.

She is now 32, doing a PhD, and working. It has impacted on her life in some ways (she had physio as a child, as she had leg pain - and then as an adult has needed help with recurring bladder/kidney infections as she can't feel when her bladder is full, which causes problems over the years).

But not in any very obvious (to an outsider) way. She scuba dives, has relationships, studies, works, and has travelled all over the world

There are obviously degrees of SB, but it really is very common to have a mild degree of it - and any greater degree would probably have been diagnosed on ultrasound scan when you were pregnant. So odds are very much in favour of there being nothing to worry about.

But you will till you know, of course....part of being a mum

Congrats again and may the nipples heal soon!

Thank you all so much for the reassurance. It has really helped. Typing this one handed as have baby on the not-so-sore breast of the two. Will try not to get myself in too much of a state, but you're right Elibean, it's very hard.

Thanks again for all your kind words

Here are some things about Spina Bifida Occulta that might give you a better idea to see if DD has it or not.

www.spinabifidaassociation.org/atf/cf/%7B85F88192-26E1-421E-9E30-4C0EA744A7F0%7D/Spina%20Bifida%20Occulta.pdf

spinabifida.org/wp-content/uploads/2010/12/SBO-Booklet.pdf

www.spinabifida.net/types/spina-bifida-occulta.html

Thanks Firemama

Hi there,
my dd2 was referred by my gp on her 6 week check to have a scan for spina bifida because she had a hairy patch on her lower back and a really knobbly spine( my words not his!) I was terrified but her scan came back clear, I think as the previous posters have said that if it was serious it would have been picked up in the scans.
Good luck and try not to worry , enjoy your beautiful baby x

Always good to check but may just be a sacral dimple.