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Pregnancy

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Original poster

Spina Bifida diagnosed at 30 weeks please help

31 replies

whatcantheydo · 19/09/2010 22:12

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.

OP posts:

Hangingbellyofbabylon · 19/09/2010 22:17

No experience of spina bifida but my dd has cerebral palsy. I thank God that I didn't know in advance and didn't have to make the choice whether to terminate as she is the light of my life. I never planned to have a disabled child but I have and I cope. I would also be very cautious that a scan can truly predict the level of disability the little one have. I think if they are feeling up for it putting them in touch with a Spina Bifida charity might give them the real life info they need.

lucy101 · 19/09/2010 22:20

HI there - I also wanted to suggest that you contact the charity ARC - they are amazing at giving support when people discover abnormalities and have to make difficult choices. You can just ring them up and chat.

www.arc-uk.org/

I am so, so sorry for your SIL and she has many many things to think about.

Mum1369 · 19/09/2010 22:23

Might be worth putting this in special needs section too - sure someone over there will have experience
So sorry

SacharissaCripslock · 19/09/2010 22:25

I have Spina Bifida - and the type you are posting about. I am happily married with two lovely healthy boys of my own - so obviously my experience is positive. That's not to say I haven't had health problems throughout my life and a few operations.

My parents (and now myself and my DH) have had lots of advice from the Spina Bifida Association so perhaps you could contact them?

nooka · 19/09/2010 22:35

I know a few people with Spina Bifada who have good lives. It's not a condition without complications (they all have brain shunts which have caused issues at times) and life in a wheelchair (they are all paraplegic) isn't easy, but to me knowing them I feel that offering termination is a fairly awful response . I hope they get lots and lots of support with their decision whatever they choose, it must be a terrible shock.

I've no personal experience of them, but the Association for Spina Bifida and Hydrocephalus web site www.asbah.org/ might be worth looking at, it has case studies and local links, so perhaps they might be able to talk to other parents or adults with Spina Bifada which might help.

lucy101 · 20/09/2010 09:18

Also thought that if they want a second opinion (and it might well be worth it) and they are near London they should go to the FMC at:

www.fetalmedicine.com/fmc/

They are brilliant and very experienced indeed.

LouM10 · 20/09/2010 17:37

My mam has spina bifida, and has had me and my sister, happily married (for the second time) haha. She is in pain every day, but is so happy with her family and life, she wouldn't change it for the world. My sister and I are both preg. so she now has 2 grandchildren to look forward to.

She sometimes needs a wheelchair, other times crutches, but anything she has set her mind to she has done. She just got her GCSE and A levels in art a few year ago, and I am so proud to have her in my life.

I understand how some people feel they might not be able to cope, but there are plenty of people with spaina bifida who lead full lives and don't let anything stop them.

Regardless of what she decides, hoping that things work out well for her.

sarah293 · 20/09/2010 17:46

This reply has been deleted

Message withdrawn

Original poster

whatcantheydo · 20/09/2010 21:42

thanks for all the messages. They actually went to the FMC and have had lots of expert input at the Harris Birthright Centre too. They have been given a very pessimistic outlook unfortunately. It's good to hear that spina bifida doesn't have to be limiting, although the most severe form still sounds like it would be difficult to cope with.

OP posts:

sarah293 · 21/09/2010 07:50

This reply has been deleted

Message withdrawn

MumInBeds · 21/09/2010 08:01

I have spina bifida, my case is not the most serious kind but still left me with continence issues and a secondary effect of it (tethered cord syndrome) damaged my mobility and balance recently until neurosurgery last year really helped. It is a painful and frustrating condition but I have two children of my own and I have carried and given birth to three surrogate children and I lead a very happy life.

My studies and my passion are genetics, epigenetics and genomic medicine and I can tell you that there are some exciting developments looking likely in the years to come, someone's own cells may be used to re-construct parts that are damaged or missing. It is not possible to say anything with certainty but I am feeling very positive about the prospects for children born now and in the next decade with problems such as spina bifida.

sarah293 · 21/09/2010 08:07

This reply has been deleted

Message withdrawn

pinkbasket · 21/09/2010 08:11

SacharissaCripslock · 21/09/2010 11:39

"SB is barely any problem at all"

Gee, thanks for just dismissing everyone with SB like that. Lovely. Yes, best hide the thread as I'm feeling rather cross now.

nooka · 22/09/2010 03:50

I don't think that Riven is seeking to dismiss the experiences of people with Spina Bifada, rather to say that from the perspective of a parent with a child with a severally life limiting disability including severe brain damage the idea that SB should be a criteria for termination seems very sad.

I agree.

nooka · 22/09/2010 03:54

Oops - hit the shut down there. I didn't want to imply that I had the same experience as Riven there, or indeed that the professionals might be wrong in their prognosis, as there might be additional issues in this particular case, just the idea that Spina Bifada alone was a good reason to terminate seems very sad.

YeahBut · 22/09/2010 04:37

A close friend's son has spina bifida. They too were offered a termination, and my friend is quite open about having seriously considered it - how could you not in the face of such devastating news? However as it had taken them 5 years to get pregnant, they decided to carry on with the pregnancy.

From what I can remember, the doctors can only give you an indication as to the severity and impact of the condition - nothing is certain until the baby is born. My friend was given a very pessimistic diagnosis but when her son was born, the SB turned out to be much more manageable than predicted. He had surgery to cover the occlusion very soon after birth. He has no sensation on the soles of his feet, but has been able to crawl and walk pretty much on track with his peers. He does have some continence issues, I understand this is very common and can be managed very successfully. He also had hydrocephalus and underwent surgery for this.
He is a bright, happy boy who is doing well in school and life.

SB is a serious condition with lifelong issues, however it doesn't have to be all bad. My friend contacted this group and got a lot of information and support. Best wishes to your friend.

NickOfTime · 22/09/2010 04:42

you might want to get your sil to look in on the 'special kids in the uk' forum too - there are a number of parents of children of different ages with sb.

ultimately, she has to make a decision which is going to affect her and her family forever. like hbob said, i'm glad i didn't have to amke that decision (dd2 also has cp) as i'm always persuaded that the 'professionals' must know. so i would probably have terminated. that said, if i had known what i know now... unfortunately medicine/ science isn't really that scientific tbh - and there's no crystal ball that will help you make a decision with a quick peek into the future.

we were told by professionals that dd2 wouldn't walk or talk. it's her 7th birthday today. she runs, shouts, screams, laughs, goes to ballet and swimming lessons, and is top of her mainstream class. she's needed a lot of help along the way - and her life will always be dictated by her cp, but we're doing our absolute best to give her the same life chances that dd1 and ds1 have. and she's eating them up.

i do feel for your family - disability is a scary scary thing in any form when it has not touched your life before - but once you get over the shock, it's just different. and then you get used to it really quickly and it just becomes something else tagged onto your life.

sending you all lots of strength over the next few weeks/ months, whatever her decision x

peregodia · 25/04/2015 06:55

We got a baby boy diagnosed with spina bifida in Oct-2014.We found it is possible to have a surgery while in womb, window is 20-24weeks, no later/earlier than that. The surgery is performed at Kinderspital in Zurich, by Prof. Martin Meuli and his team. You need to request NHS to cover the costs through an S2 form. NHS covers the costs of tests, surgery and hospitalization. Our boy has now much better chances than if he wouldn't have been operated. If you need more info you can contact us at [email protected].

carrierpenguin · 25/04/2015 08:38

Sorry for your news OP. Realistically you will get mainly very positive stories by posting on a forum, not many people will come on to tell you how awful it is.

goodnessgraciousgouda · 25/04/2015 09:23

OP - I'm so sorry this has happened to someone close to you.

Basically all they can do is listen to what they think is the right decision. They shouldn't be pressured in either direction. I think often people have a gut feeling about what they want to do - they can obviously do a lot of research, but obviously they don't have too long to reach a decision.

OddBoots · 25/04/2015 09:28

This thread is nearly 5 years old, what was to be has been.

ragged · 25/04/2015 09:28

z o m b i e.

Stinkylinky · 25/04/2015 09:35

Peregodia, why are you commenting on zombie threads about spina bifida? This is the 2nd one I have seen this morning

Goldmandra · 25/04/2015 09:35

ZOMBIE THREAD

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