Anencephaly or birth defects in a twin pregnancy

[PuddingPie16]

Hi Everyone,

Today we had our 12 scan and we were told that one of the twins unfortunately had a complication. Their head hadn't formed properly from conception. Whilst they were happy and alive, it's not possible for them to survive past pregnancy.

My husband and I are absolutely heart broken. It is a feeling I've never had before and have no history of miscarriage or complications from our DS.

We now have to wait for a referral by a Consultant to Birmingham Hospital as our local hospital is quite small and twin pregnancy referrals have to go there and I'm so so frightened. It's Friday so we won't know anything else now until Monday which now seems so far away.

The other twin so far appears healthy and how it should, which is a bit of light in a horrible situation but I can't help worry about what is going to happen next.

We've been told we need to wait until we go to Birmingham until we know what will happen next. I don't know what our options will be, if one twin pregnancy is still viable or if we will need to terminate. Has anyone been through anything similar at all please?

Thank you.

Bump

Anybody?

I'm really sorry, what sad news to receive and a worrying time for you. I suspect this is a highly unusual situation which may be why no one has answers for you at your local hospital.

After a Google and read of medical articles there are certainly reported cases like yours of one twin being born healthy and surviving. It also looks like selective termination can be an option in some cases.

I hope you get the answers you need soon and get a plan of action x

They will guide you but the final decision will be your. You can continue the pregnancy as it is or you could terminated the fetus that won't survive without terminating both. There might be other options as well which the team will go through with you. Sending you hugs.

I'm sorry this must be very stressful.

A close friend was told similar news as you with her twin pregnancy. She sadly lost that twin mid pregnancy but the other was very healthy and he is now a very happy 3 year old.

The hospital will be able to talk you through the best options. I wish you all the best X x

Thank you for your kind responses, it really helps during this difficult time.
I'm waiting on a call from the Consultant regarding the referral but I did have a call from the Midwife this afternoon. She has informed me that it's likely they will offer a selective reduction and told me the details of that. It sounds horrific and of course has risks but think it may be the best option for this pregnancy to continue with the one baby.

Thank you again and hope you all have a good weekend.

Hi pudding, I can't think of anything helpful to say but I wanted you to know I've read this and am thinking of you. I've had (and am having) a nervous pregnancy and the wait for news, and the not knowing what will happen, and the second guessing, is horrible. I'll keep an eye on this thread, take care.

Hello, while o have no advice myself, I have two friends who have carried babies with anencephaly and chosen to continue the pregnancies. One had her baby a few years ago and the other is currently pregnant. I am sure they are in anencephaly support groups on social media. If you would like any more information they would be happy to share. PM me if you would prefer. Take care. xxx

I’m so sorry you’re going through this, last year I got told my baby had anencephaly

There’s a support group on Facebook called shine anencephaly support, And another called anencephaly angels.

Whilst my pregnancy wasn’t a twin one, there’s a lot of posts in these groups about twin pregnancies which you may find useful

I know the pain this causes, I’m thinking of you

So sorry you are going through this

You'll be offered a selective reduction but it will depend on the type of twins you are carrying. If they share a sac or a placenta or both then unfortunately it will be very very high risk for the healthy twin.

I’m so sorry you’ve had this news. The hospital should give you various options: selective reduction now, which does carry a risk of putting you into premature labour which may ultimately lead to a miscarriage of both babies. The second option is to continue until 32/34 weeks and have the same procedure then which again may put you into labour but at that gestation the the other baby would be expected to survive. The third option is to continue the pregnancy with both babies until full term and make plans for compassionate care for the baby who isn’t expected to live for long.

Obviously all these options carry risks and will have their own psychological impact. As well as the anencephaly support mentioned above the Twins Trust (formerly TAMBA) have a bereavement group for people who have a death of one or more babies in a multiple pregnancy as it comes with a particular impact. There are befrienders who will have gone through similar to you; either with difficult decisions, with staying pregnancy with one dead and one live twin or continuing a pregnancy knowing one twin will die as a baby. You will find lots of support there. I hope the hospital appointment helps to work through your options.