Spina bifida

[Sare123]

Hi
My husband and I went for our 20 weeks scan thinking our biggest fear would be accidentally finding out what we were having a boy/girl! We were so very wrong!
After the scan we were immediately told that our baby had serious issue with the development of his brain and spinal cord.
I broke down my whole world crashed before my eyes! We saw a specialist who was very informative. My beautiful baby boy, has a huge gap in his spinal cord from the middle to the tail bone with a large sack of nerves sticking out of his back.... his brain hasn't formed right and has excess fluid because of the break in the spine! The doctor could say 95% sure that my boy will never walk or have control of his bowels he couldn't tell me how severe his brain would be (maybe def, blind or brain damage) the spilt is the biggest they have seen for a long time! Now we have the heart wrenching decisions to make about my babies life!
My world has fallen apart and I feel my boy move and kick all the time.
I wanted to ask if anyone else has been in this position ?💔

I haven't but two of my friends have and I didn't want to leave you hanging.

I know very little about one friend's decision, other than she did have the abortion. The other friend's baby had serious heart problems that meant he would be very unwell and regularly hospitalised and probably not survive beyond infancy. They decided to abort, not least because they already had a child who would suffer from their divided attention for a sibling who was unlikely to live.

It was a hard decision especially waiting for the abortion. They tried to have her deliver the baby and then hold him as he passed away but she insisted on the other kind of abortion done in utero.

They went on to have another healthy baby immediately.

I am really sorry to hear your sad news about your little boy. I have no experience but I just wanted to wish you strength. Hopefully others will come along soon who can help discuss things with you:

I'm so very sorry you're faced with this. I'm afraid I can't really answer your questions as I haven't experienced this myself but I didn't want to not reply.

I had a family remember who had spina bifida. She died about 10 years ago but I cannot stress enough that it was not related at all to spinda bifida in the slightest. Had she lived she would be about 55 now. I don't know how severe she had it by comparison to your baby, but I can tell you about the impact to her. She walked but sort of wobbled when she walked (as if one leg was shorter than the other), her feet were a bit curved too and she had a colostomy bag for urine on a permanent basis. She may have some other less obvious problems that I wasn't aware of. Her children were perfectly healthy with no problems. When I've spoken to her mother about it she said that in those days there wasn't much medical support, so i don't even know if doctors picked up on these things before birth.

In your shoes I would do 2 things. I would ask for a second opinion. Not because I thought that answer might be different but to make sure I had all views. I would also see if there are any charities out there who might be able to offer some more in depth advice and support. I'm not saying that it's the answer to everything but it might give you some more rounded information to help you make a decision.

I know Someone that went through exactly the same.... she had To end the pregnancy at 20 weeks 3 years later, she has 2 healthy dc! Please think what's fair on that unborn child yourself and your future children.

Hi OP, in your situation I would ask for a rescan by feral medicine to confirm the findings but based on your initial post I would terminate, and I say this as a woman who wanted 3/4 children and has had to stop after 1.... x

I'm so sorry this is happening to you OP.

My experience is limited but I think I agree with others that I would seek a second opinion. A friend of mine had a child diagnosed with spina bifida at 20 weeks. His prognosis was very poor, and she decided to abort the pregnancy. She gave birth to him and had cuddles etc after he was born. She went on to have a healthy baby 3 years later.

There is a brilliant spina bifida charity called Shine who might be able to offer you support or advice

I have been through exactly this OP. I'm so sorry that you are there now and I completely understand the shock that you are feeling.

The diagnosis we received was pretty much identical to yours although at 18.5 weeks and picked up by the Triple test (not sure this is still done). I received a phone call at work saying I'd been booked a scan as a 'caution' and call me a pessimist but I knew straight away as there is spina bifida in my family.

Because the scan clearly showed such severe issues, we decided not to wait for a second opinion and we did terminate. I can honestly say it was the worst period of my life, going through shock and grief as well as worrying how my friends and family would react (stupid I know but I don't think there is a 'normal' way to react / deal with this). Having a family member living with SB meant even more guilt but our baby's prognosis was much more serious than family member, with hydrocephalus being as serious as the non closure.

All I'll say is it is a horrific position to be in and while lots of people will have opinions, you need to do what is right for you. If you'd told me I'd have a termination before that point I'd have said you were crazy. Our baby would have had zero quality of life and I still know that we made the right decision.

One mistake I made is shutting myself off from everyone. Until the termination had been done, I didn't tell a soul with the exception of DH which was a mistake. I was at my lowest ebb and really should have talked. The 10 year anniversary was last week and to the rest of the world, I look like I have it all now but I regularly still break down when I'm alone and I think it's because the emotions are still bottled up. Ive still never really spoken about it to anyone other than very matter of factly and while I can write and even speak quite well about the factual experience, I struggle hugely with the emotional side - but that's me with lots of things to be honest.

I went on to have a healthy daughter who is almost 9 now so it was pretty quick afterwards but I think this was part of my coping mechanism.

Happy to answer any questions you may have and again, I'm so sorry that you are in this position. Xx

Thank you everyone for your honest, supportive advice and condolences.
My husband and I have got another opinion but unfortunately they have told us the same news about our beautiful baby boy!
The Spina bifida is from his T12 to S2 which is extremely large, his brain cerebellum is banana shaped. Both doctors (one a Spina Bifida specialists) said he hasn't seen one this large in a long time. We are utterly heart broken that we have to make such a decision. Thank you again for all your helpful reply's. it nice to know support is out there.

No experience of this but just giving some support at this difficult time

I couldnt pass by without leaving a note of support and sympathy .

I wish you all the strength you need to make your decision .

I'm so sorry to hear your news. We had a similar shock at our 20 week scan. It looked like Supna Bifida but it was something else more rare. Just know that, although it will be an awful time, whatever your decision, you will get through this. Lots of love.

So sorry OP. Are you anywhere near London? In your shoes I would get a final view from Professor Nikolaides at the Fetal Medicine on Harley Street. It's not expensive and he is incredible.

I'm so sorry about your news but glad you had a second opinion

@Sare123
Hi just read this post. I can completely understand your situation. Iv had no children yet but I'm almost 10 weeks pregnant after my first ivf. I am too completely terrified about the later abnormality scans. I'm having some private tests done soon and have already made a plan in my head about if a serious problem was detected.

If i were you i wouldn't continue with the pregnancy, what you decide now will decide how your future will be and your child's. I personally would find it too hard to bring up a child with such serious problems and i feel so bad for saying that but even after my ivf i would still have the termination.

Don't feel bad and ask lots of questions to your consultant

💐