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Miscarriage/pregnancy loss

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Anencephaly?

15 replies

Cookie89xoxo · 19/01/2025 14:21

I had a private dating scan weeks ago and i was about 8+ weeks at the time. Few days ago I went for my NHS dating scan and they found that the baby is 12wks and 5days but has anencephaly, it was awful to see on the screen and I got really upset during this time and was escorted out the hospital. They told me there's basically no fix for this and if the baby doesn't pass during miscarriage I will be offered a termination but I have to go to a specialist hospital first for a more in depth scan to confirm this and then be offered treatment. I am devastated and don't know how to process any of this. My partner is trying to desperately offer support and comfort but I just want to he alone , I feel numb and it doesn't feel real. I don't understand how my baby isn't even dead and i know he or she is not going to survive regardless. I am heartbroken and scared, has anyone else had this and how do u cope with it after ? What's the process etc. Im so scared

OP posts:
BatshitIsTheOnlyExplanation · 19/01/2025 22:24

I'm sorry you had this news, but are you sure this was an actual diagnosis? It seems very early.

BatshitIsTheOnlyExplanation · 19/01/2025 22:24

What did you see om the screen?

YesThatsATurdOnTheRug · 19/01/2025 22:32

I am so sorry OP, that must be absolutely horrendous to be going through. I really hope you can reach out for some support, there are lots of support groups online. You will get through this, but it's just heartbreaking for you.

DazedAndConfused321 · 19/01/2025 22:47

BatshitIsTheOnlyExplanation · 19/01/2025 22:24

I'm sorry you had this news, but are you sure this was an actual diagnosis? It seems very early.

It is very commonly identified at 12 week scans. Unfortunately, it can be very clear what it is. There can be no doubting it in most cases found so early.

DazedAndConfused321 · 19/01/2025 22:51

OP, my best advice is to ask questions, find communities online, find anecdotes of other mum's who have experienced this. Talk to anyone you can, and don't hesitate to ask for help. Be alone to collect your thoughts if you need to.

There are mums who post on social media about their experiences in finding anencephaly and genetic disorders in early pregnancy and document their experiences. Your midwife or whoever is handling your case will be able to mentally prepare you for what comes next.

My thoughts and heart are with you x

Cookie89xoxo · 20/01/2025 14:27

BatshitIsTheOnlyExplanation · 19/01/2025 22:24

I'm sorry you had this news, but are you sure this was an actual diagnosis? It seems very early.

Yeah so i was 12 wks and 5days at the scan baby looked like a baby until it got to the head the head had a huge balloon ontop of it and the nurse said she's sorry but it's something that can't be fixed they've referred me to a specialist at a different hospital for a more in depth scan where they will offer me a termination but I haven't heard from them yet as apparently it's not classed as an emergency

OP posts:
Cookie89xoxo · 20/01/2025 14:27

BatshitIsTheOnlyExplanation · 19/01/2025 22:24

What did you see om the screen?

The baby but the baby's head has a huge balloon ontop of it

OP posts:
Solocatmum · 24/01/2025 21:27

I’ve just seen this and just wanted to send you my love and support.

Two years ago this happened to me and I had a TFMR at 13 weeks for anencephaly. It broke my heart.

People cope in different ways but I found the Shine group on Facebook and also ARC charity (which has a forum of those who’ve been through it as well as a helpline of amazing ladies). I also spoke to a local baby loss charity.

i’m not going to say you will feel ok in a couple of months, but time and lots of talking does help and get out all the crazy and painful thoughts.

xx

NameChanges123 · 24/01/2025 21:45

Thinking of you... xx

ImagineRainbows · 24/01/2025 21:51

I’m so sorry.

Sadly as you have been advised anencephaly is untreatable and is a fatal diagnosis.

It’s commonly diagnosed at the dating scan as it’s very obvious. I’m very surprised your private 8 week scan didn’t see it for the same reason and would be seriously questioning their ability to carry out such scans.

If you haven’t already been signposted to ARC they are a great support and can give you more information if needed.

The specialist scan is likely a fetal medicine. Before offering a medical termination they have to double check the scan to ensure no errors are made, but sadly anencephaly isn’t a defect that’s easily mistaken so it will very likely comply confirm what you already know.

Balloonhearts · 24/01/2025 22:34

I'm so sorry for your loss and I'm sorry that they have let you go home distressed and not understanding your baby's condition. They should have given you time to process the shock and then explained it and answered any questions you had.

I can give you a bit of information if that helps as I took a special interest in neural tube defects so researched it a lot but I'm not a doctor so my understanding is limited and you should definitely take your advice from qualified medical personnel.

From experience (not mine but family) you will see the specialist to confirm the diagnosis. This usually happens within a couple of weeks. You may be sent for a fetal MRI to get a better look at the structure of your baby's brain and the contents of the balloon shaped sac you saw.

They will confirm the diagnosis or it may be found inconclusive or incorrect. You will be given the options depending on the results to either terminate or attempt to carry to term.

If it is anencephaly and you do not terminate, it is quite likely that you will miscarry. Termination on that case is the best option for all 3 of you.

If the results are inconclusive then it is a personal decision and I encourage you to do your research and make the decision you feel most at peace with.

It won't be treated as an emergency as the baby either has it or doesn't and there is no treatment to give. Personally I hate this as I think it is beyond cruel to force a mother to wait in limbo to find out if her child will survive. I'm so sorry you are in that position.

If you don't want to know details of the condition itself just stop reading here, I have no desire to distress you further with 'maybes' and 'sometimes'.

Unfortunately there is nothing anyone can do to treat anencephaly. Its a failure of the neural tube to close and means parts of the brain and skull have not developed or are missing entirely. I'd hazard a guess at skull being open as I've never seen it look like a balloon before so possibly the brain growing outside the skull. Normally you see that with hydrocephalus rather than anencephaly but every case is different.

It's quite rare. I think the oldest child with this condition lived to be 5 years old. He didn't have much function though and there was debate at the time over how aware he was. I believe it depends on how much and what parts of the brain are missing.

In your babies case, if they've offered you a termination, it's likely enough is missing that he or she would not be able to support their own life functions. Currently the placenta provides oxygen and keeps them alive. Once born, they would not be able to support their own functions. No reflexes mean unable to breathe, swallow, blink or protect their own airway. The nervous system may or may not have developed and its possible that cardiac activity will stop shortly after birth.

I really hope this has helped you understand a little more and not made you feel worse. I'll be thinking of you and your little one. I know my cousins partner used a support group on a forum, I'll ask her what it was. Her baby didn't have anencephaly but her pregnancy was aborted due to a condition that was similarly incompatible with life.

Cookie89xoxo · 25/01/2025 00:50

Solocatmum · 24/01/2025 21:27

I’ve just seen this and just wanted to send you my love and support.

Two years ago this happened to me and I had a TFMR at 13 weeks for anencephaly. It broke my heart.

People cope in different ways but I found the Shine group on Facebook and also ARC charity (which has a forum of those who’ve been through it as well as a helpline of amazing ladies). I also spoke to a local baby loss charity.

i’m not going to say you will feel ok in a couple of months, but time and lots of talking does help and get out all the crazy and painful thoughts.

xx

I appreciate that thank u so much. Yeah they've confirmed it with the specialist and offered me a medical termination which I'm due to have next wk. They have put me intouch with the hospital grief team etc and they've walked me through it etc they've advised going forward if I wanted more kids I'd need a Higher dose of folic acid etc but I haven't even thought about that yet. It just feels a Blur tbf atm

OP posts:
Solocatmum · 25/01/2025 19:46

Cookie89xoxo · 25/01/2025 00:50

I appreciate that thank u so much. Yeah they've confirmed it with the specialist and offered me a medical termination which I'm due to have next wk. They have put me intouch with the hospital grief team etc and they've walked me through it etc they've advised going forward if I wanted more kids I'd need a Higher dose of folic acid etc but I haven't even thought about that yet. It just feels a Blur tbf atm

I’m glad you have the grief team. Your mind may well go in all kinds of directions - they will have heard it (or a variant) before and be able to support.

Practically, the medical termination may be quick but equally it might not be - so work on basis you will possibly be in overnight. Pack an overnight bag with sweets etc, and comfortable clothing, slippers etc.

You will be asked about memories and might be given local charity or Sands memory box - maybe ask the grief team in advance as you could make your own if not. You might find it horrific now but find comfort in it later. They will also probably ask if you gave him/her a name if you want to. If you don’t know sex, you might just ask them to use “baby” or a pet name or a gender neutral name. They will probably also ask you about funeral (either individual or group). There is so much to consider and guilt can affect your decisions so keep options open if you aren’t sure. I very much needed the funeral as I wanted to give him full respects - it meant a lot to me.

You might also get asked about testing. I had genetic testing for him - there was nothing wrong with him chromosomally so just the anencephaly but it was important for me to know that.

I took 3 weeks off in total from finding out (2 weeks from losing him) - wasn’t long enough in retrospect but I felt kind of obliged to go back quickly. Take as much time as your general finances and/or work sick pay/ bereavement pay enable you to.

Talking does help and I found friends very supportive. But amongst support be aware people do say lots of well meaning but painful things like “least it was early”, “they would have passed anyway so it’s for the best”. If you have a child you may get “least you have [child’s name]. None of these things are strictly wrong but i found it hurtful because that baby was the future I wanted.,

Sorry, all a bit of a brain dump but hopefully helpful xx

Cookie89xoxo · 25/01/2025 20:05

Solocatmum · 25/01/2025 19:46

I’m glad you have the grief team. Your mind may well go in all kinds of directions - they will have heard it (or a variant) before and be able to support.

Practically, the medical termination may be quick but equally it might not be - so work on basis you will possibly be in overnight. Pack an overnight bag with sweets etc, and comfortable clothing, slippers etc.

You will be asked about memories and might be given local charity or Sands memory box - maybe ask the grief team in advance as you could make your own if not. You might find it horrific now but find comfort in it later. They will also probably ask if you gave him/her a name if you want to. If you don’t know sex, you might just ask them to use “baby” or a pet name or a gender neutral name. They will probably also ask you about funeral (either individual or group). There is so much to consider and guilt can affect your decisions so keep options open if you aren’t sure. I very much needed the funeral as I wanted to give him full respects - it meant a lot to me.

You might also get asked about testing. I had genetic testing for him - there was nothing wrong with him chromosomally so just the anencephaly but it was important for me to know that.

I took 3 weeks off in total from finding out (2 weeks from losing him) - wasn’t long enough in retrospect but I felt kind of obliged to go back quickly. Take as much time as your general finances and/or work sick pay/ bereavement pay enable you to.

Talking does help and I found friends very supportive. But amongst support be aware people do say lots of well meaning but painful things like “least it was early”, “they would have passed anyway so it’s for the best”. If you have a child you may get “least you have [child’s name]. None of these things are strictly wrong but i found it hurtful because that baby was the future I wanted.,

Sorry, all a bit of a brain dump but hopefully helpful xx

No that's actually been really helpful as I have thought about alot of those things. I'm not religious but I am baptised and apparently the priest says a blessing so I might ask if they can do a small baptism also. I will probably have the baby cremated tbh as I'd like to put the ashes into a necklace or something to keep long term with me etc. Speaking to grief team Sunday they are going to book me in Monday, im not sure if I'm allowed to eat or not when there as I bled alot after my csection with my daughter i needed 4 units of blood after so they are concerned, I know there's risks with any procedure but I had to sign a consent form that if I develop a bleed which can't be stopped they can remove my womb entirely to stop the bleeding which felt crazy to me but i signed it anyway as its life saving.whole thing just feels abit overwhelming and yeah people do keep saying things meaning well but I'm finding it really annoying , never had a good relationship with my mom for many reasons and she's recently found god instead of drugs lol so we told her the news and she keeps messaging me telling me she's praying for the baby and to keep my fingers crossed for the best , imclike wot do u think is gonna happen exactly I've already said there's nothing that can be done the baby can't be fixed? So that's making me crash out at the moment tbh more than anything. I will ask about the memory box as I'm not sure what u do and don't get and names wise I have no idea. We couldn't settle on any tbf as it was so early anyway bt I appreciate all the info you've given i really appreciate it and im sorry for your loss also xxxx sending hugs xo

OP posts:
Solocatmum · 30/01/2025 19:48

Just wanted to check in and say I hope you are coping ok. I hope you get lots of rest and support x

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