Diagnosed with 'higher level spina bifida that's incompatible with life' at 12 weeks scan

(12 Posts)
Eeeeekkkbfp Mon 10-Dec-12 21:29:15

Hi,

This is my first post on here, not sure of the acronyms yet or if I'm posting in the right place so sorry and bear with me.
I went for my 12 week scan today and was told my baby had a brain defect that was incompatible with life. I had to then go to another hospital to see a consultant. He said it was like spina bifida but a higher level (have no idea what these means.) even if I carried on with pregnancy the outcome would not be a living baby. I have a termination booked on Thursday now. Everything happened in such a blur and I'm absolutely heartbroken. But i feel absolutly terrible as the only thing I can think of is trying again for another baby. They have told me I will need a prescription for folic acid as I need a higher level than other people. I'm in such a mess and am so confused I've never even heard of this happening to anyone else. So if anyone else has gone through this I would be grateful if you could share your experience or advise me as I was thinking of maybe asking for a second opinion but again that's probably just wishful thinking and delaying the inevitable.

Thanks for reading xxx

duchesse Mon 10-Dec-12 21:33:24

I have no experience of this but couldn't read and not post. I am so terribly sorry that this is happening to you.

I did once have an ERPC after a missed miscarriage at 12+6 and if it's any reassurance it was very straightforward and I went on to have a healthy DD 3 years later.

If you need any support there are certainly other mumsnetters who've been through something similar.

I don't know anyone who has been through anything like this, so hopefully someone more suitable will be along soon.

It sounds like a terrible situation, can't imagine how you are feeling and what you will be going through over the coming weeks. Do you have a supportive family and friends?

SminkoPinko Mon 10-Dec-12 21:39:27

I am so sorry. What a terrible loss and an awful shock.sad

Eeeeekkkbfp Mon 10-Dec-12 21:58:14

Thank you for your kind words. My DP has been lovely, but very upset as it is his first child. I have DS who is 5 years old today. So have tried to be normal for him when he came home from school but is so hard. My mum has been great. But I don't really want to talk to anyone sad the baby was right size and had a heartbeat and everything it was just such a shock, I had a bleed at 6 an 8 weeks and both times had a scan and they said all ok so I was not expecting this at all. I didn't have folic acid deficiency with my DS even thou I didn't find out I was pregnant till 8 weeks (unplanned) and everything was fine. But this time, it was planed, took folic acid 2 months prior to conceiving and all through pregnancy so it's such a shock to find out this was the cause. The only thing I can think is my morning sickness has been horrendous so maybe I was throwing the vitamins back up sad

ArthurPewty Mon 10-Dec-12 22:00:26

Message withdrawn at poster's request.

louistheseventeenth Mon 10-Dec-12 22:12:22

I'm so sorry.

I've had a completely unexpected awful scan like this- no words can convey the shock and heartache involved.

With regard to the second opinion, if you need one, ask for one.

I didn't have one with my baby because the hospital said there was no need.....and I desperately did need one.

I really wished I had been less reasonable about it and insisted as it would have helped me emotionally to deal with things.

My advice would be to do whatever you can to look after yourself.

As for the termination- I have had to have several erpc's now, and to be honest they are the easiest bit of the whole process for me- the fear of them is horrible, but the op is quick, and I felt a great sense of relief when I woke up and realised that bit is all over. I didn't bleed much afterwards or have pain, so I could at least start to emotionally recover afterwards.

As for taking the folic acid- look the drs have told you frankly that you need more than the standard amount. It is not becuase you threw up your vits or anything else you did wrong, I promise.

It is very natural to try and find some reason to blame yourself, I know I did, from my dog pulling me over one day to carrying a heavy box, but it is not your fault. Be gentle with yourself, this is a horrible, horrible thing you are going through and is something that would try the courage of anyone.

I know you might not feel this way at the moment, but you will survive this.

Lyftiduft Mon 10-Dec-12 23:30:46

Hi eeek, so sorry. Just wanted to say you are not alone, but you are braver than me for starting a thread. I had my 12 week scan just over a week ago (30th Nov) and my baby was also alive and the correct size, but had anencephalic symptoms and acrania (no skull). These and spina bifida are neural tube defects, so I'm guessing you've had a similar diagnosis. I had a surgical termination Tuesday last week (ERPC), though I had to fight for mine as they wanted to do it medically and after a traumatic birth in the same hospital I felt I couldn't cope. I now feel guilty for worrying about me and not mourning the baby/the baby that could have been (although I suppose I did a bit and still am). I am also scared of how this will affect me longer term as I had PTSD and PND after my (healthy) DS and I've only just felt normal-ish in the last six months or so, and of future pregnancies sad

The last week has been horrendous. We are surviving though. I have just felt ready to talk about it more freely but didn't really want to speak to anyone a week ago. My DH took most of the week off work too as he is also really upset. I am trying to keep busy but I'm not going back to work yet, as I'm a teacher and don't want to have to pretend everything is fine to a load of teenagers and the majority of my colleagues who (thankfully) didn't know I was pregnant.

This was an accidental pregnancy, but we are desperate to try again now. I know exactly what you mean. We're waiting for test results, a consultant appointment and I need to take a high dose of folic acid for at least 3 months before TTC.

I have done a fair amount of reading on anencephaly and acrania now, I am one of those people who likes to understand why (have a fairly scientific background). It won't be anything you've done, the sonographer told us it was a problem with embryology, very unlikely to be genetic, and not something that could prevent us trying again. They are running tests for me anyway in case there were other problems, but I think that is just routine (I have a history of mc as well so it may be that too).

I really wish I had a scan picture of the baby now, however weird it sounds it might be something to consider. Also look at ARC, (antenatal results and choices)- they have a phoneline but I found looking at their website quite helpful.

PM me if you want to chat, and (hugs). I am finding I have good days (today's been one of them) and bad. Emotionally I am all over the place but I think this is probably normal. Take care of yourself x

Pizdets Tue 11-Dec-12 11:46:49

Hi eeek and lyfti,

So sorry to hear what both of you have been through, it's the worst feeling in the world.

We lost our little girl to a v rare chromosome problem in the summer and getting the news and the first few days are so unbearably hard.

I second what lyfti said about ARC, I called them a couple of times crying in the first few days and they gave very good advice.

Sorry I can't really say anything useful but I'm thinking of you both.

Piz

magicpainting Tue 11-Dec-12 12:12:42

i really sorry this has happened to you. i had to terminate after the 12 week scan in september. i had a surgical and it was a really easy process physically (I really didn't want medical) and my period came back after 4/5 weeks. it was awful at the time, but i'm a practical sort when bad things happen and i figure these things unfortunately do happen and thank god i found out so (relatively) early. i was in a bad way for 2-3 days afterwards (hormones) i think, but i returned to work after a week and getting on with things helped me a lot. i've had the news that whatever was wrong was probably genetic (they don't know - no chromosone problem and not spina bifida) and i've got a 25% of it happening again.
i didn't have a second opinion as i could easily see on the scan that the baby wasn't right - and I haven't doubted this (I have an older child and could clearly see the head was not right) but if you want one, do ask - i'm sure they would scan you again. it was a really horrible time - but i perhaps unusually (compared to somethings I've read) I didn't visualise the fetus as a child and found this helped.
you will get through it and the hospital were really good with me and i hope they are with you. they put me in a private room as the normal "surgicial" terminations area was for those terminating because they don't want a child.
I had no bleeding at all afterwards which i found very strange but apparently is normal.

flower11 Tue 11-Dec-12 16:11:09

Hi
the same thing happened to me in august 2010, as others have said it sounds like your baby had anencephaly a form of spina bifida that effects the brain instead of the spine. our baby had not developed a brain or skull. other than that she had grown normally just like yours. She was our first baby and we had been trying for 7 months and i had been on folic acid the whole time. The consultant said it was just one of those things, happens in around 1 in a 1000 pregnancies and theres nothing you could have done to change things if that makes sense, i kept wondering what i had done wrong, but sadly these things just happen.

The need to try to concieve again after a termination is very common, because that need to have a baby is great. I started on the high dose 5mg folic acid pretty much straight away and we started ttc after 3 months when my periods had sorted themselves out. (I'm saying this to give you hope) We now have a healthy daughter, she took awhile to come so had a good dose of folic acid.

Im realy sorry you are having to go through this, as others have said the ARC forum is good for sharing with others when you feel like you are going through it on your own there are lots of lovely ladies there who really understand.
Take care xx

marsymum Mon 31-Dec-12 12:33:10

I'm also new on these boards and came across your post.

I've been taking the 5mg per day dose of follic acid as well (available only by prescription) instead of the usual 400ug per day dose. maybe for the same reasons as you.

There is a lot of literature available on this, which I'm sure a decent doctor could provide you with. Best to follow the advice.

Hope very very much that it works out for you. Saddened to hear about your loss.

Take care.

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