Very bad news at 12w scan, any experience and advice welcome

[Monten]

Hi, first time poster here. I've lurked for a while, on TTC boards, frantically symptom spotting, delightedly on Pregnancy boards after getting pregnant in November, and now I find myself here. I've read a lot of stories already that have been so helpful and comforting to me and am in awe at how positive and brave you all sound.

If it's okay I'd like to share my story and perhaps get some advice, because I am so devastated and scared right now.

I'm 36 and this is my first pregnancy. My DP and I went for our 12 week scan last night and it didnt go well. The nuchal measurement was 8 - which I know is pretty much off the scale. Additionally, she could see a problem with the heart (its leaking) and could see no nasal bone or stomach (altho didn't say that neither existed - but it seems likely that must be the case).

They gave us odds of 1 in 11 for Downs, 1 in 2 for one of the other Trisomies. We had a CVS straight away.

So all in all a very bleak picture. Even if the initial CVS is clear, they know already there are heart abnormalities which would require further investigation. She seemed to imply that she was surprised I hadnt miscarried already and that this could definitely still be on the cards.

I'm hoping against hope we get the initial results on Friday and don't have to wait the weekend. It seems to me very obvious that it will ultimately be bad news.

I feel like a terrible person who has given up on my baby but part of me is hoping that it comes back positive for one of the Trisomies. Because I'm so scared about having to make the decision to terminate and I can only assume it will be easier if we have a very definitive diagnosis. Also, if its going to happen I just feel like I want it to happen so I can move on. But again, I feel so terrible for saying that.

She looks so sweet and I was so happy and I just cant believe this has happened. I was so worried about a MMC and as soon as I saw the heartbeat I was so relived. I just didnt consider this possibility.

I would be grateful for any replies from people who can share any experiences. You all sound so strong and this is the most frightening thing thats ever happened to me, I hope some of your strength will rub off on me.

I'm so sorry you are going through this .

I had a MMC in 2010 and, although that was sad, at least we knew where we were IYSWIM. Waiting for the results of tests etc. must be awful.

I'm sure someone will come along very shortly with some actual relevant experience and helpful advice for you .

Thanks so much for your reply Santas. I'm sorry to hear about your MMC, that must be so hard. As I said, I was so worried about a MMC myself before the scan. The consultant seemed to imply that I might miscarry shortly anyway. I don't know if that would be good or bad. I know these things happen, sadly, all the time but its such a shock. My dad died three years ago and I had a similar sensation then - like I've suddenly seen behind the magic curtain where bad things do happen and there's no guarantee ever they won't happen to you. Innocence gone. That sounds very bleak and it is, but also kind of life affirming in a weird way. Thanks for your message

I've no experience of what you're going through but your post has really touched me. I just wanted to say you have my sympathy and will be in my thoughts.

Good luck. Whatever you decide it'll be the right decision.

I am so sorry you have had bad news. Is it definite that there are these wrong? I ask as I was told I had something wrong with my baby and was pushed for a termination. We said no, we would have the baby regardless. I will be thinking of you and your baby.

Sorry to hear you're going through this. I just wanted to add my support and best wishes. This must be so, so tough...

Like PP said, your decision will be the right one.

So so sorry to read your post, heartbreaking news. I have been in a similar position, sadly. I'm not sure if I have any good advice though, other than to keep breathing in and out, get through each hour, and ultimately make your decisions because they are right for you and your family unit, no one else.
We did take the decision to terminate, and it was by far the most difficult thing I have ever done, and I find it hard to imagine anything in the future ever being more difficult. I have learnt to live with the pain and the heartbreak of it over time, knowing that I believed it was the correct decision for us.
Don't know what else to say other than so so sorry OP

Hi Monten

I don't have any experience of tests done in pregnancy but I do have a child who was born with a serious and complex heart condition. He had quite a bit of surgery as a baby and is getting along fine now (touch wood). So there's lots they can do with dodgy hearts.

It sounds like it's more than that for you and my heart goes out to you. Don't beat yourself up for feeling like you want the results to come back clearly bad because hope is a hard thing to hold onto sometimes.

You'll have to keep strong and wait - and that's really really hard too.

Thanks everyone for your replies. It really means so much when people take the time to reply so thank you. I know I just have to be brave about having to make a decision and know that it will be from the heart and a decision made with love for this baby.

Toffee - We don't have definitive results yet (fingers crossed we will get the prelim results on Friday) but everything added together plus the fact they can physically see some abnormalities already means I am really only expecting the worst.

Stillstanding - I'm sorry your baby was born with a heart condition, I have heard too that they can do amazing things these days.

Just have to wait I guess. The worst thing is I am still starving (have been since day one of this pregnancy) but am crying so much and feel so grief stricken can't bear the thought of food.

Thanks for your thoughts everyone.

I am so sorry you have to go through this. I know exactly what you mean about the magic curtain. I found out very bad news at my 20 week scan. It is such a shock. The wait for definitive results was the most difficult bit in a way.

Feel free to ask me specific questions if you have any.

Thanks Humphrey. I guess I just need to wait until I get my results. The thing is I feel so pregnant, massive boobs etc. I'm not sure if you had a termination or not but can I ask how long it takes for your body to realise its all over afterwards?

I did have a termination and physically I returned to normal very quickly. My baby had Patau's - trisomy 13.

Be very kind to yourself. Hope you manage to get as peaceful a night as possible.

so sorry to hear - doesn't look promising, does it

I had a MC in 2008, nuchal measurement at 11 weeks 5 days was 95% - had another scan 2 days later but there was no heart beat by then.

It's agonizing for you. poor you.
I know I'd be praying that I either get a miracle or that it's over naturally asap and I can only wish the same for your baby.

I hope you see what I mean, from a loving POV.

Our girl was saved from being "born only to suffer".
I miss her every day and wish she could've been healthy.

(big hugs)

No advice but I'm so sorry your in such a heartbreaking situation

Hi, I'm sorry you're going through this.

I too had similar results from a 12 week scan in 2003 and had a excruciatingly long wait over a weekend for the results. Heartbreaking new for us, baby also had Patau's syndrome and we were advised to terminate. It's when I first found Mumsnet - I spent hours pouring over the web looking for other's experiences. It was all so unexpected and unknown and reading other women's stories (both happy and sad) were an enormous help through it all.

Hiya so sorry to hear about your scan. It's good that you have had the CVS already. I had a bad harmony result in March and had to wait a few days for CVS/amnio which just dragged things out for us.

Our baby had Downs and I had a termination at just shy of 16 weeks.

It was a very bleak time, I was devastated, I wouldn't have got through it without this board.

I know exactly what you mean about the curtain thing. It was so shocking to have something so awful happen, and impossible to make any sense of it.

I just tried to take things a step at a time and just get through each stage as best as I could.

I am 37 and was fortunate to get back to normal physically quite fast after the termination, and very lucky to fall pregnant again 4 months later (due in April).

The next few days will be hard but you will get through it. It really helps to post on here. I really hope you get good results but if not, we will be here to help and support you. I found it good to be able to post how I felt plus ask loads of questions even quite sensitive stuff about the termination process and whether to see my baby, people here were so kind to share their experience which really helped.

Wishing you a fast and good CVS result.

Thanks everyone.

Ramonaquimby - I absolutely loved the Ramona books when I was growing up! So much so that I mentioned Ramona to my boyfriend as a potential name for this baby but he put the kibosh on it. Grr

Can I ask a personal question? Don't answer if you don't want to. When you say 'similar results' did you mean 'also bad' or similar sounding (i.e. nuchal/heart/stomach). I know I just need to wait for the results but am frantically trying to diagnose.

I agree, it is so helpful reading other stories.

Hi AliBingo - thanks for your message, yours was one of the stories I read today before deciding to post. I'm so sorry you went through this too. And huge congratulations on your pregnancy. I know if it is worst case scenario I will be pretty desperate to get pregnant again. I can feel it already. My sister in law is a month ahead of me so her baby will be born in June. Of course I'm so happy her pregnancy appears to be all normal, but I think it will be a really hard time. Maybe being pregnant again by then will help.

So sorry monten. Likewise I had bad news at my 12 we scan and nothing can quite describe that sudden feeling of out of control despair when they start saying something is wrong.

I really hope you get a definite answer as we struggled with that. Our baby want moving much and had fluid on the brain. I had a cvs which was clear and blood tests which were clear but each subsequent scan showed more fusion of the limbs and more fluid build up all over his body. I was told at 21 weeks he wouldn't survive birth and the condition was fatal although they still didnt know what it was. So we terminated at that stage. Very very hard process emotionally. A post mortem was needed to tell us what actually happened but it was just very rare. We had a 1 in 4 chance of it happening again but have fortunately gone on to have 2 more healthy sons.

Please feel free to ask anything. It is an awful stage youare at right now, pregnant but fearful and uncertain of the future. But we are here to help. I hope you get some clarity on Friday.

Sorry for typos... dodgy phone typing

So sorry to hear about this. I know exactly how you are feeling as we went through this after getting terrible news at 20 week scan , also to do with baby's heart . Had a life limiting condition to the point they said if the baby was born they could only provide palliative care . Heartbreaking situation to be in and Im sending you hugs x Was the hardest decision and time of our lives and our little angel will never be forgotten but we went with TFMR as didn't want to put a tiny baby through surgeries for tiny short life in hospital ... if you need to ask any questions at all please do xxx thinking of you x

I had the same thing at my 12 week scan, five and a half years ago. Our baby had part of its brain and skull missing, as well as other major organs / limbs growing incorrectly. A few days and many scans later, we were given the diagnosis of Trisomy 13 (patau's syndrome). Obviously, we were devastated, and made the decision to terminate. Now, with hindsight, I'm glad the diagnosis was so terrible and final. It made our decision much easier, and so I understand your need to have a
definitive answer. We have gone on to have a healthy DS, and #2 is in the way (I'm 15 weeks).

Wishing you all the very best at this difficult time. It truly was the worst experience of my life, but the care and support we received was superb. It made all the difference.

So sorry :(

I miscarried a baby with Trisomy 13, it was the last of four miscarriages and the abnormality was discovered during tests for underlying causes for the losses (I had a healthy son with pg no. 5).

It is v hard to come to terms with such awful news; thinking of you.

I'm so sorry you're going through this OP and I hope you get whatever support you need. I'm sorry I've nothing more useful to say.

I'm so sorry to hear you are going through this, I've had a similar experience and the waiting is awful, our baby had a Nuchal of 5.4 and our odds were 1 in 2, due to the fact we were slightly later on in pregnancy I had to have 2 amniocentesis (the first one failed), finally got the results it was clear for downs and the other syndromes but has a problem with chromosome 11 which was inherited from my DH, unfortunately there are multiple problems with him including a basically non existent brain function. The rest is bad news, I'm booked in for a termination this morning, I'm 18 +2 and so very scared. I had to wait 6 weeks to get here so I know exactly how you feel, I really hope your story is a happier one and I hope this hasn't upset you too much just felt I had to let you know I understand what your going through and am here if you need a chat, I will keep an eye on your post to hear for an update. Best of luck xxx