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Original poster

Anyone been through having a scan and being told baby has anencephaly

9 replies

caden123 · 27/09/2019 18:31

So me and my partner decided to try and have our fourth baby last one to complete our family. Waiting for the day our scan came was an exciting time but during the scan they said they found a problem and it would have to be confirmed by a specialist consultant. The day after came we again went into the scan room and saw our tiny baby on the screen 10 weeks moving around normally but we were told the baby had anencephaly and would be incompatible with life. Devastating to hear an exciting day turned into the worst day ever being told we had two options to surgical or medical termination. Has anyone else gone through this and could offer some advice

OP posts:
WTF99 · 27/09/2019 18:39

caden123 how absolutely awful for you and you partner. I'm so sorry.
This helpline number might be useful. ARC are a reputable charity.

Anyone been through having a scan and being told baby has anencephaly
Clayplease · 27/09/2019 21:00

So sorry to hear this. 😭 Sorry I don't have any useful advice. Please make sure you get some time to yourselves to grieve and process it all Thanks

SylvanianFrenemies · 27/09/2019 21:13

I'm so sorry you are going through this. I had bad news at a 12 week scan last year, that ended up with us choosing to end my pregnancy due to genetic abnormalities. We already have 2 children. I had a medical, which has the advantage of being able to see and hold the baby. This has been a huge comfort.

The ARC-UK helpline is fantastic. Flowers

Teddybear45 · 27/09/2019 21:29

Did you want to get a second opinion?

VeganVeganVegan · 27/09/2019 21:37

Yes I've been there it was over 10 years ago. I went for the 12 week scan and saw the heart beating to then be told there was a problem with the head. Someone else came in and said he was 99% certain it was anencephaly. They made me wait another two weeks to go have it confirmed 3 hours away then by the time I had the medical I was almost 16wks. My daughter was born a year to the day later, I started on high dose folic acid straight away. I'm so sorry this is happening and I'm happy to chat if you need to Flowers

Trav123 · 27/09/2019 21:45

I went through this late last year. If I can help at all drop me a pm. Sending you hugs xx

sohypnotic · 28/09/2019 09:29

Poor you, what a horrible thing to go through Thanks no personal experience, but there was a couple on 24 hours baby hospital on channel 4 a few weeks ago who had the same diagnosis, they opted to continue the pregnancy and deliver the baby, and were able to then spend a short while with their child, take photos etc, before they passed. There are other options, get specialist advice x

Tallulahdub · 19/12/2020 04:01

Hi, I’m so sorry to hear about your experience. I know your message is over a year old but I am going through the exact same thing at the moment and I came across your post.

I had my 12 week scan yesterday and the doctors confirmed that my baby has anencephaly. As we are in Covid times I was on my own (my husband had to wait in the car park) and I just found the whole thing very traumatising and hard to take in. My dad passed away a couple of months ago and the news of my pregnancy had really given us all a much needed boost.

As I live in Ireland, I wasn’t sure if ending the pregnancy would be an option for me legally but I was told that it is legal under recent legislation. We have to wait a couple of weeks as it is Christmas time for this to happen and I feel that this is going to be torturous. I’m just so heartbroken.

I suppose I’m wondering if you or anyone else out there have gone on to have healthy pregnancies and babies after an experience like this?

I took folic acid for a year before falling pregnant so I’m so confused. We really want a baby and we’re just despairing.

Thank you for your help and I hope you are doing well x

Jl2014 · 22/12/2020 00:15

Hi Tallulahdub, I had 2 pregnancies affected by anencephaly. I took folic acid for the first one and high dose folic acid for the second. Unfortunately it didn't seem to work for me. Folic acid doesn't prevent ntds for everyone. After the second anencephaly I was put in touch with the PONTI study so for my third pregnancy i took the high dose folic acid along with inositol as a supplement. 3rd time lucky-I had a healthy baby. She will be 5 years old next month. I will never definitively know if it was the inositol that helped but in my heart I think it was.

Summing it up like that probably over-simplifies the gut wretching horrendous ordeal that it was.

Good luck, there is hope and it is possible to have a healthy baby after this awful awful time. X

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