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Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Original poster

Terrible news at 22wk scan

18 replies

Jasmum · 23/01/2004 15:26

My sister who has been trying for a baby for 3 years has just got back from her 22 week scan where they told her the baby has spina bifida. She took her folic acid etc etc...
She has to go to a specialist next week to find out more.
I have no idea what to say or how to help & am totally devastated.
Does anyone know anymore about this? Or can help me in knowing what to say? She doesn't want anyone else in the family to know yet.

OP posts:
CountessDracula · 23/01/2004 15:27

Oh Jasmum I'm so sorry. I don't know anything about SB, just wanted to give you my support and best wishes.

sykes · 23/01/2004 15:29

A very close friend of mine found out the same news at her 21-week scan (this was a few years ago). If you want to contact me, please do. Don't want to post details - doesn't seem right - but please do feel free to contact me if it would help.

katierocket · 23/01/2004 15:30

sorry jasmum, no individual experience, but have a look here, should be some useful info
spina bifida

JanH · 23/01/2004 15:31

Jasmum, all I know is that spina bifida can be very mild - try not to panic yet. I know it can be very disabling, but it may not be for her. This is the website foe the Spina Bifida Association - it has lots of information and explanations. Hope the news won't be too bad.

Marina · 23/01/2004 15:42

Jasmum, also hoping the news won't be too bad for your sister, what a terrible shock. Spina bifida can mean minimal disability, as JanH says. One of the other mums had it at ds' nursery and had no mobility impairment at all, two children, job etc. I really hope your sister gets good follow-up treatment and plenty of medical support.

sobernow · 23/01/2004 15:50

This reply has been deleted

Message withdrawn at poster's request.

fio2 · 23/01/2004 16:14

Jasmum my old next door neighbour had spina bifida and it was severe. She was a lovely clever person and although was quite severly physically disabled was very mentally intelligent went on to hold a job down, and had a degree etc. Unfortunately she did have a limited life(29) Also there is a girl in our m&s who had moderate sb and is a wonderful person, does really well. It can be really mild also.

Good Luck to your sister

Original poster
Jasmum · 23/01/2004 16:20

Thanks everyone. I am so shocked & stunned & feel so angry that life can be so bl**dy cruel & unfair.

OP posts:
hmb · 23/01/2004 16:26

I girl I worked with had SB when she was born. It was fairly minor, shee needed a few ops. She was fully mobile and didn't even have a limp. I only know that she has sb because she once told me.

HTH and your sister and babe are fine

zebra · 23/01/2004 16:46

It can be very variable.... One of Britain's top athletes (wheelchair racer) in the para-lympics has spina-bifuda. Have you ever seen the wheelchair race in the London marathon? I always think it blows the road runners away for excitement.

suedonim · 23/01/2004 16:54

Much sympathy, Jasmum. My niece lost a baby with spina bifida last year. She had a very difficult pg, culminating in a miscarriage at 22wks of a baby with sb. She is now 5mths pg again and all is well this time, thankfully. I hope your sister has a positive appt with the specialist next week.

fio2 · 23/01/2004 18:12

who is it zebra I cannot remember her name......is it tania someone?

fio2 · 23/01/2004 18:13

no its tammi gray thompson...or someone of that sort of description!!!

good luck jasmum

eidsvold · 23/01/2004 20:06

We were told about our dd's serious heart ddefect at 21 weeks - in fact the local hospital said it was something evenw orse than what it turned out to be - still upsetting but we too decided not to tell anyone until - we knew exactly what it was and we also read up on it.

We carried on as we had started - excited and celebrating ther pregnancy, birth and so on - taking it one day at a time. Now after two open heart surgeries and some complications - have a very cheeky dd who also happens to have down's syndrome - oh and chicken pox just at present.

Some advice - be there for her, listen - just let her talk and do some research yourself so you are better informed, still treat her pregnancy as exciting not worrying etc.

Hope that is a help.....

Jimjams · 23/01/2004 20:19

great advice from eidsvold. Your sis is still going to be having a lovely gorgeous little baby- whatever happens.

To add to the positive stories- a friend at school had SB I didn't even know until someone told me after I'd been at the school for about 4 months. She walked with a slight limp and had to wear a special shoe.

Original poster
Jasmum · 23/01/2004 21:18

Thanks, I went to see her tonight & she's OK, quite philosophical - she had at least 5 miscarriages before this pregnancy & it was much wanted. Her husband passed out whent they were told. They'll know more next week but it is looking quite severe.
I have a healthy 16mo & feel blessed but also quite bizzarely guilty tomight.
Thanks eidsvoid, that's very helpful advice which I'll remember.
Sykes, I forwarded my mail to mumsnet, hope to talk soon.

OP posts:
Jimjams · 23/01/2004 22:29

Jasmum- I've always read that it's very difficult to jusge the severity of problems from the size of the hole (for want of a better word). I think it is difficult to get a realy accurate idea form the scan.

Just another word of warning for your sis- when doctors talk to you about the problems they have a tendecy ime to give the worst case scenarios- they can be very negative. I don't know whether eidsvold found this but I have friends who have and we always have (my son is autistic- so slightly different as obviously it's not picked up until way after birth). It can be hard to stay positve, but she may well get a better idea of what life will be like with a child with SB by logging onto online support groups/chat rooms. When I first began to suspect my son was autistic online support groups were a godsend to me, and it made the eventual dx etc far far easier- as I knew what we were getting into anyway.

Good luck to your sister.

eidsvold · 24/01/2004 12:01

Jasmum you will feel guilty as do lots of mums when they find out dd's story - just try not to be pitying but rather supportive -

I found it very patronising to be told I was a saint for the choice I made and other mum's did not know how I did it - well I did because dh and I are her parent's and it is our job and the rewards are plenty..... but whatever your friend's decision - just support her and be there for her. Also don't not talk about your little one because you think she might be upset - I sometimes get upset when I hear how amazingly progressive my neice's development is compared to my dd but I love hearing about it as well. Does that make sense?!?!

And yes the medical profession do tend to paint the worst case scenario picture. When dd's heart defect was picked up by the local hospital - the condition they told us she had ( which specialist found was not the one) was much worse in terms of outlook than what we faced.

The other thing we found - despite the amazing technology that could see all this in the womb - we had to wait until dd was born to get a clear picture.

WIth her down's syndrome - we were told some amazingly inaccurate things and still are on the odd occasion by the medical profession.

Like Jimjams - parents and people who are part of the support groups at the best for help and advice.....

Hope that helps - I know I am rambling so I'll stop.

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