Neural tube defect at 12 week scan

[BeccaT123]

I cannot believe this has happened to me but after finally getting pregnant through IVF I was told the baby’s skull has not formed properly due to a serious neural tube defect - exencephaly .
I was taking 400mg of folic acid but now wish I’d been taking more - also only started taking it a couple of months before the transfer. Worried this is all my fault and now I have to terminate my baby - the thought is destroying me. The doctor said whilst folic acid can help decrease chances it’s not my fault but I can’t help but question everything now.
I was so happy to get to the 12 week mark. I’d known from previous scans there was a heartbeat and all was looking healthy so this is such a shock.
I’m not sure I can put myself through the rollercoaster or another ivf round but I probably will in time. This just feels like a nightmare.
has anyone been through this, and did you opt for surgical or medical termination?
thanks x

I’m so sorry you are going through this.
I had a similarly catastrophic diagnosis (heart related) last year and had a surgical termination in late December at 14 weeks. I opted for surgical termination on the basis that it would be easier for me to cope with mentally and physically (it was my first pregnancy and I didn’t want to associate labour with this loss in the future) but it is a very personal decision. Some women want to be able to see and say goodbye to their baby. Tbh I had to fight quite hard for the surgical termination, they like to put you through to the BPAS clinic process (which may compromise the ability for them to run certain tests on the baby). They eventually agreed to do it in hospital. The process was physically fine - but emotionally and hormonally there is a massive crash post procedure. I found the following 2-3 months very dark but am feeling much better now.

We are also now going through IVF (same sex couple) for our rainbow baby. I recommend asking about bereavement support at the hospital and you could also register with ARC. Their forum is immensely helpful but I think you can’t join until after the termination.

This is and will be horribly hard, but you will get through it. Many couples (more than I realised) go through this and go on to have healthy living children. Please don’t blame yourself. Plenty of women don’t realise they are pregnant and sail through without taking folic acid - you were taking it including prior to conception. They think there are a substantial proportion of neural tube defects which are not folic acid related at all - it would be also worth asking the FMU team what causes can be explored and ruled out (including implications for future pregnancies).
Wishing you all the best.

I am so sorry OP, no advice but just wanted to offer a hand-hold.

One thing I can say with absolute certainty is that it is not your fault. It is no one's fault. You took the recommended dose of folic acid starting well before you became pregnant, so you did everything you were supposed to do. Sadly this has happened anyway.

Wishing you all the best OP whatever you decide to do xx

Sorry to hear this! Went through a similar incident last year. Our first round of ivf resulted in pregnancy. Our 12 week scan didn’t indicate any issues more did the initial tests. Went for my 20 week scan and was told there was a small issue with the brain but that it was probably nothing. I was referred to the fetal medicine unit and out there were loads of other issues. We did an amino which confirmed an Edwards diagnosis. I was 23 weeks + 4 days when I had my surgical termination. I really struggled for the first 6 weeks and wasn’t impressed by BPAS. The doctor was fine but some of the nurses were really cold.

I am now pregnant again after an FET. It’s been hard but what I’ll say is it is never your fault… unfortunately it happens… having someone advocate for you is important. Feel whatever you want to feel.

Just to echo the others it’s not your fault. It’s one of those awful odds that have affected you.

Sending thoughts

Thank you all xx

@Leaf86 Thanks so much and sorry you went through this too. I hope you get your rainbow baby x

I'm so sorry OP and you aren't alone

My 1st pregnancy had patau syndrome, discovered at 11 weeks on private NIPT. I live in England, but pre-covid, was working for several months of each in the country I was born in. I got pregnant there, so my treatment might be different to in the UK. I have since had 2 MC's in the UK, and 2 rounds of IVF here, and work in healthcare, so have a good understanding of what is/isn't offered in England.

This isn't your fault at all! I assumed I'd have a surgical TRMR, but as I have small fibroids, was advised that medical would be the best option. I personally think this might actually have been to enable a better autopsy, but cannot be sure. I had the termination in a hospital, but I know some in the UK have had to go to a general termination clinic- which I appalling IMO.

I hope you have been offered counselling and someone to discuss your options with? Tommys or ARC can help. Happy answer any questions you might have xxx

So sorry this has happened to you. Folic acid does reduce the risks but unfortunately not in all cases. I had a similar experience (heart related) personally I went for the medical because I wanted to hold my baby. I have no regrets of that. He was to fall asleep inside of me and the labour be induced. He would know nothing but love and warmth. Surgical is not kind to baby. Medical is more natural like a miscarriage. Each to their own and everyone decides how they want to do it because of their own personal preference.

I’m so sorry for your loss. Sending love to you and your partner.

After 2 years of TTC, my first pregnancy ended 20 years ago when anencephaly was diagnosed at the 19 weeks scan (the first scan I had, as early scans were not offered by my health authority at that time). I still remember so clearly that awful day. Having taken folic acid, I like yourself couldn’t understand how it could have happened and I blamed myself. I had a medical termination as I was advised it was the safest option to end the pregnancy. It was not an easy time for either myself or my husband. We held baby and said goodbye. He was perfect (for 19 weeks) except for the top of his head, which was covered when we held him. The midwife with us was amazing. We subsequently underwent genetic tests and no ‘reason’ was ever found. I was advised to take a higher dose of folic acid when trying to conceive again and told it was just ‘one of those things’.

ARC we’re helpful. I found their newsletters cathartic. Knowing that I was not alone really helped. It was hard returning to work. The loss of a much wanted baby, at any stage in pregnancy is difficult, adding on the mental impact of a medical termination was at times almost unbearable.

However, we were very fortunate and I went onto to have 2 planned and successful pregnancies … taking a higher dose of folic acid in preparation. I must admit I didn’t enjoy being pregnant or giving birth, as a pp said - having a medical termination did influence that. However my beautiful babies helped me to recover.

Imagine my feelings then when a year later I found myself unexpectedly pregnant again … not having taken any folic acid this time. I was so upset and so cross with myself and assumed the worse. But all was ok and I went onto to deliver another beautiful healthy baby.

So please do not blame yourself. It really is not your fault. Sometimes bad things just happen.
It will take courage to try again if that is what you decide to do, but also please give yourself time to grieve.
I certainly had dark days, but there can be happy endings … my 3 beautiful teenagers remind me of that every day!

Thank you @MarmiteCoriander and sorry for your loss too

@PinkBump2022 How many weeks were you? I’m thinking of going down the medical route too as thinking that may be better for the baby - can’t bear the thought of him/her being sucked out of me although my family and partner think I should go down the surgical route as it’s quicker/easier and to protect myself from more pain

@Pandersmum Sorry you went through the same thing - it’s truly unbearable isn’t it. I struggle to cope with it every day when I wake up and remember. Dreading the termination more than anything - I just want to keep the baby safe and warm inside of me. I am so sad he/she doesn’t have his skull - it doesn’t seem fair. I was so looking forward to being a mum. I am glad you had a happy ending and went on to have healthy children.

@PinkBump2022 Please don’t say “surgical isn’t kind to baby” when women on this thread, including myself opted for this. How thoughtless. The baby has passed away inside you before anything happens surgically and they know absolutely nothing about it. It’s an absolutely heartbreaking and impossible situation either way, but everyone should be supported to choose whatever they believe is best without being told a particular route isn’t “kind”.

I was 17 weeks at the time.
@Leaf86 I do believe it’s not kind as it was explained to me in great detail so I could make my choice. I won’t go into those details as they are not nice but I wanted my baby out in one piece so I could hold him close. I choose what I choose for my own reason and as I did say each to their own for their own reasons.

I’m so sorry. I found ARC charity very supportive and helpful when I had to tfmr after fertility treatment.
Personally I went for surgical management but my subsequent healthy ivf pregnancy was a placenta praevia which may or may not have been related to scarring.

To add - I had to go to Marie Stopes because my hospital only gave the option of medical - this was Leeds. I think they ought to be ashamed of themselves for treating grieving mothers like this.
Marie Stopes was physically good care but emotionally traumatic. Protesters outside and staff thinking you are having an abortion. I wanted DH with me before and after and he wasn’t allowed.
I would still choose surgical over again. I was 15 weeks + but don’t feel it was in any way unkind to the baby, at that gestation they aren’t really a baby.
My rainbow is nearly 10 is that gives you hope. xx

I just wanted to say how very sorry I am that this has happened to you.

Also to say that you do not need to feel guilty - taking folic acid is a very recent thing, and trillions upon trillions of healthy babies were and are born to mothers who have not taken this at all. In no way is this your fault - it is simply part of life's lottery and you got a crap ticket this time. I hope that when this is all over you will feel strong enough to start again after giving yourself time to grieve.

Take care. x

Becca. Yes. The pain at times was unbearable. Your post brought back many memories. Life can be so very cruel at times. But please remind yourself this is not your fault.

Whatever option you choose, you will get through this, however difficult the next few days are. Sending hugs and in time, I hope that you can also have the happy ending that we had.

Please PM me if I can be of any assistance.

Thank you all so much for your kind messages - and sorry to hear what you have all been through too - such strong women and I’m glad you’ve all come out the other end.
I’m pregnant for another week before I can have the termination. Doing a bit better but dreading the termination and the emotions that will come after. Praying I have my rainbow baby one day!x