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Get updates on how your baby develops, your body changes, and what you can expect during each week of your pregnancy by signing up to the Mumsnet Pregnancy Newsletters.

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Get updates on how your baby develops, your body changes, and what you can expect during each week of your pregnancy by signing up to the Mumsnet Pregnancy Newsletters.

Antenatal tests

Sonographer diagnosed holopresencephaly

102 replies

Hope26 · 19/04/2014 18:59

Hi all.

Last Wednesday I got given the worst news of my life. This is my first pregnancy and they detected NT at over 3.5mm. The ultrasound scan at 13weeks 5 days showed the baby had a flat face, couldn't see nose. They told me the baby will not survive and it looks worse than Down syndrome. I have been asked to come in the next two weeks for an amnio test to confirm what is going on. Anyone experienced the same thing? Any advice will be very helpful. I am so confused right now and have lost my appetite completely. Thanks

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LuckyAugust · 28/04/2014 22:21

I'm so sorry for you Hope. We had a tfmr in February - it was the most heartbreaking experience of our lives. our hearts will never truly heal but we are starting to have some hope in the future and we're ready to try again. Sending you big hugs x

Hope26 · 29/04/2014 04:12

Thank you. I just want to say that mumsnet has been amazing in terms of support and the mums on here are truly amazing people. I look up to any woman who has had to make that hard decision and any woman who has decided to keep their baby and go on to deliver a truly special baby with needs and all the mothers who have had healthy babies who love their children and go that extra mile. Women are awesome!

My 13w scan showed devastating results which I think I didn't realise how severe it actually was.. Whereas my husband had. when you hear it's worse than Down's syndrome- dont ignore it. you'll be even more heartbroken later on when it's time for it to go.

This experience has made me appreciate life so much more and not worry about the little things in life.

Stay strong and I wish you all the best x

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Sahkoora · 29/04/2014 09:26

Hope, that's awful news, was really hoping for a good outcome for you. You sound so strong and positive, you are an inspiration.

I hope you and your DH get through the next few days and weeks ok. We are always here to vent to if you need it.

lostlove · 29/04/2014 12:01

Thinking of you and your DH, Hope

Have you had the chance to discuss next steps with the hospital?

If you think it might help you to know, one thing they may be able to do is to tell you the sex of the baby by karyotyping (I think that's what it's called).

HappySmileyFace · 29/04/2014 12:40

Sorry to hear your update Hope

Take it one moment at a time and take care of yourself.

Hope26 · 29/04/2014 13:07

I'm going hospital now to the hospital to see what my options are for removal. I don't want to know the sex of the baby whatever has happened has happened and I'm okay with it now. Got to be positive and move on. Thanks ladies I will keep you updated x

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Hope26 · 29/04/2014 16:26

Having surgical tomorrow. Less traumatising as medical, hope it goes well. Don't want to do this but got no choice x

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MrsMaturin · 29/04/2014 16:32

Very sorry to read what's happened. I hope the surgical procedure goes very smoothly. One word of caution I would urge is that today, in the midst of this very upsetting and shocking situation you feel that you don't want to know more about the baby. That may be how you always feel but it may be that over time those feelings would change. It might be an idea therefore to explore - or ask dh or your parents for example - to explore with the medical team what you might be able to know in the future if you want to - and therefore if there is anything in particular that would be as well to have done - even if you don't choose to know whatever is discovered now. From your post early this morning I get the sense you are laming yourself a bit for hoping for the best? If that is the case, please don't. We have to hope. That's what gets us through and loss is loss whether you hope for the best or fear the worst. You weren't wrong to hope.

ajandjjmum · 29/04/2014 16:37

Wishing you strength Hope.

SweepTheHalls · 29/04/2014 16:39

Hope you are being very strong, be gentle on yourself in this vey tough time xx

Quangle · 29/04/2014 16:41

so sorry hope. I went through similar - had an amnio and ended with a TFMR at 16 weeks. I also didn't want to know the gender. Just wanted to get through. I shed a lot of tears but life got better (2 DCs born healthy 1 and 4 years after). Hoping my story and others gives you some hope, for when you are ready. In the mean time, thinking of you at a sad time.

TheBabyFacedAssassin · 29/04/2014 16:44

thinking of you xx

AreWeThereYeti · 29/04/2014 18:10

What a sad situation. I have no advice but wanted to say I was thinking of you and your DH

ButEmilylovedhim · 29/04/2014 18:23

Have said a prayer for you much love xx

cookoos · 29/04/2014 18:24

im thinking of you hope xxxxx

Mashoona88 · 29/04/2014 18:31

Sending hugs and strength to you and your DP Hope

Hope26 · 29/04/2014 18:41

Thank you ladies. I will feel so empty tomorrow. Mrs Maturin thank you so much for your advice. After the procedure is done they will examine the tissue and give me results in 6 weeks time and inform me of any findings. I probably will request to confirm gender.. Although they made it clear that they couldn't tell as it wasn't formed properly. I can't believe I'm going to go and leave my baby and come back home. it's devastating but my hope for future pregnancies will never end. I will keep consistent in my prayer and whatever is good for me will happen and whatever wasn't meant for me will be avoided. Will keep you all updated on the procedure. Whoever I can help and guide I'm more than happy to. Just message me x

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MrsMaturin · 29/04/2014 19:29

You sound very sensible OP. Something loved can never be truly lost. You've had the last three months carrying this baby and whilst it has ended in such a sad and difficult way, you've still had that time to share. My thoughts are with you.

HappySmileyFace · 29/04/2014 20:56

Hi Hope -we had some genetic testing done to see if there were issues beyond this illness and through that sample sent to be analysed they were able to determine the baby's sex. I, like you, didn't want to know the sex but I am glad that if one day I change my mind I could find out.

Thinking of you. May your baby rest peacefully.

Hope26 · 30/04/2014 09:19

Thank you ladies, I will definitely request the sex of my baby. I was quite emotional before do didn't want to know do you all are right, I shouldn't make hasty decisions. I need to know if I am able to x

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HappySmileyFace · 30/04/2014 12:13

Do what feels right for you Hope -for me not knowing the sex was something that made it easier for me to process everything, but I am glad to have options if one day I change my mind.

Be kind to yourself in these early days.

MrsMaturin · 30/04/2014 18:22

Yes it's about having options. Sometimes just knowing you HAVE options is enough. I hope all has gone very smoothly for you today.

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Hope26 · 01/05/2014 08:52

Hi ladies,

If want to share my experience of the surgical procedure in case any one of you may be thinking or undergoing it soon.

1 thing I would like to say is that the procedure itself is absolutely painless as you forget you exist for about half an hour under general anaesthetic.

I went in at 1130, got seen by the nurse and she was lovely. she even got teary seeing me cry and said have faith everything happens for the best. Your baby is in safe hands. I felt a lot better ad calmed down. I then got seen by the doctor around 12pm. She explained the risks associated with the surgery but do say the risks are rare. You sign consent form and she puts a pill in your vagina to dilate your cervix. She said she will come after 2 hours to do the procedure.

The pain just felt like period pain and it wasn't bad at all. My husband was with me so time flew by. Make sure you take someone with you as I was very emotional as soon as I entered the hospital till I left. Can't imagine women who do it on their own.

After two hours the consultant came who was operating on me. I asked her relevant questions such as how experienced are you! She looked at me funny. Anyway I had to know. She explained the risks and said it won't take long. Then after ten minutes the nurse who was going to sedate me came and took me to this scary looking room full of medical equipment and through the doors I could see the operation theatre. I had a panic attack. They had to give me oxygen mask kept talking to me and kept telling me to pray and everything will be okay. I was hysterical about the thought of officially losing my baby. Before I knew it I was KO. I don't remember a thing about the procedure.

I woke up in the recovery room in a hysterical state again, te same state they sedated me in. Crying and emotional, no one is allowed in the recovery room but they had to call my husband in to calm me down. It was done and there was nothing I could do to change the situation.

Before being discharged I had to urinate. I had low BP so they monitored me. I was bleeding quite heavily but they said that's normal and will continue to two weeks. I have been given antibiotics to take for 7 days to prevent any infection.

Overall, I don't think I had the strength to take the pill and suffer with emotional distress till Sunday. It's done and I know my baby is in a safer place. It just wasn't meant to be.

The tissue will be examined and will come in 2-3 days. The full set of results will come in 6 weeks time where I will be meeting with the consultant. Consultant said sometimes they can determine the sex of the baby and tell you and sometimes they don't tell you. I insisted they tell me so let's wait and see.

This has been a life long lesson for me. I will remain positive and look forward to my new adventures and pray I conceive again when the time is right for me. Appreciate all the blessings you have in life from your health your wealth your family your children. Im going to show more gratitude to the creator of all things- that's what's getting me through this and the best remedy for a broken heart.

Thanks for all your support. My belly feels empty but it's all part of the process x

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AiryFairyHairyAndScary · 01/05/2014 09:03

Gosh, I not suprised you felt emotional. I'm sorry you had to go through that. Look after yourself. I hope your DH is ok too.

Hope26 · 01/05/2014 09:09

He's very supportive and he's doing well. I think so far it's been about how I'm dealing and him looking after me mostly.. As I'm a lot more emotional than him. It's my turn to take care if him as I'm back in my senses. Thanks ladies x

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