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.

Monten life is shit, so sorry, I really don't know what to say. You are making a really tough choice, but you are thinking of both your boys when doing so.
What struck me in your first post was 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.
You are in no way a bad person, having to live with the unknown for the rest of your pregnancy would be unbearable. I can totally understand the reasoning behind what you were saying.
Be kind to yourself.

I am so so sorry for you to have this terrible situation. My 3 yr old dd has Tetrasomy 9p, so e tra 9th chromosome, v rare, but wasn't diagnosed til 6 months ago after countless tests. Nuchal tests etc weren't available where I live without paying and I just assumed all would be ok and wouldn't happen to us. Meant we didn't have a clue what was going to hit us and didn't have such difficult decisions to make. Life is hard with her disabilities but she's on the milder end of where she could be with her condition. She's my little princess and I love her more than can say. Am thinking of you and so sorry you have to go through this.

Monten, I am really sorry to hear your news. You will have made the right decision for you, its such an emotional and personal decision that only you can make. We all always try to do the right thing by our babies, and sometimes it helps to keep that in your mind.

I told you about my experiences with my daughter, but didnt say that in 2006 I also lost another baby at between 12 and 13 weeks. I had problems with bleeding throughout but scans told us baby was ok, but I did eventually lose her when the heart stopped beating. I was given the option to wait to lose her naturally, or have a medical or surgical procedure. I waited a week, but was in pain and it wasnt happening naturally so I had surgery. Like you, I felt that being awake was the only thing I could do for her, but actually physical side ofvthe surgery was fine, and I think it helped me recover physically more quickly.

I still think of my first baby a lot, and she will always be part of my family in my heart. I planted a rose on her due date, and find find other ways to remember. Her due date was in july, and after it had passed i fell pregnant again. My next daughter was healthy and well, no signs of a problem.

You will move forward. Be kind to yourself, in time it will be easier.

Thinking of you x

Thanks everyone for the kind words and thoughts, it means so much and helps so much.

I'm going to call the hospital tomorrow, we haven't been offered an appointment with a consultant - I dont actually know who it was who gave me the news because she didn't introduce herself.

I just want the next bit to be over. I know it will get better and happier times lie ahead.

I hope me and DP are okay - he can't seem to say or do the right thing at all at the moment and I can feel myself shutting him out. I've already been horrible to him Must remember its different for them.

Sorry to hear the results.

I don't have any personal experience to share, but didn't want to read and run.

Take some time to think about your options now, and be kind to yourself.

hi monten I just wanted to say I'm so sorry to hear that the results weren't in your favour. I had similar results almost 3 years ago and can still clearly remember the exact moment we found out. we too made the decision to end the pregnancy, however surgical wasn't an option for us as we'd had to wait for an amnio and then had further tests done to try and determine the severity of the situation. for me the medical route was right and we got to hold our little girl... something we'd not thought we would want to do until that moment. if you would like any info on the medical route let me know, always there. and don't worry about your dp, he will be ok. I was body horrible to my dh, particularly in the days after the results, I just had to explain that I was having these intense feelings that I just wasn't in control of and he was the one I was taking it out on. sending you much love xxxxx

I think its just the nature of the beast that DHs have to take a back seat to a certain extent.
At the end of the day, you are the focus here. Just try not to be too horrible, he probably feels just as lost and is doing his best.
Lots of love to you both. x

I'm so sorry to hear your news about your little boy. It is one of the worst feelings in the world - I didn't realise at the time when I got the news about our son but I went into shock afterwards so just be really kind and careful with yourself and your DH. I remember not understanding my DH afterwards - his responses to it all were different to mine.

All best wishes for today's appointment. Get the answers you need to make the right decision for you. For me the medical termination didn't go very well and I wish we'd been able to make a decision early enough for a surgical termination. You can ask the difficult questions (I did) (and don't want to upset anyone here) about when your baby dies - you might find that you can hold your son after delivery even if the delivery is by medical route (I'm not sure).

Monten

I'm sure it's him trying to be helpful while feeling utterly useless.
just tell him to put up with your emotions, and that if you snap or argue it's not about him, it's about the whole sad situation.

he needs to be told that, because he is just as lost and rattled as you are, without a doubt.
I really feel for you, it's a horrible situation - but I do believe the mother is hurting more because it is happening inside her so it's literally more personal.

Monten, I did the same. I sort of shut him out to try & save him from the pain? I even went to hospital for the termination alone; I didn't want him to have to witness it, knowing he couldn't help/change anything. I just wanted to focus on it myself. He picked me up from hospital afterwards.

Just a note though; my poor hubby did have a bit of a breakdown moment a few weeks later. Luckily his boss had been through similar and let him have a few days 'working from home', which he needed. Don't let hubby try and carry on as normal, you both need to talk and deal with the grief. We didn't and it was a mistake xxxx

Oh Monten, I'm so sorry to hear about your little boy. You don't need me to tell you you're making the right decision, but for what it's worth I think letting a child go to prevent their suffering takes unspeakable courage and love.

Just get yourself through the next few days hour by hour and breath by breath, and be kind to yourself.

Not the same, but I had miscarriages in the past & it's different for men, but still very hard. He's grieving too, but has the added pressures of being the manly protector, while feeling pretty useless & unable to do anything, but also guilt that it was me going through it physically.

Just keep talking, keep hugging & you'll get through it

Monten I sent my OH out with his best mate for beer last night, I know he's hurting too but I can't carry him and this on my own. I need to focus on me and what happens next so he needs someone to off load to. I'm finding it really invading my space which isn't fair because this is his baby too.

Can you send your OH out with his mates too? It has helped us :)

Hope you manage to get an appointment at the hospital asap. I drew a blank until I asked to speak to the EPU and then everything started to get sorted. My termination was on the regular gynae ward though (in a side room thankfully!).

My DH definitely found the whole thing a lot different to me, I think it affected me more emotionally whereas for him it wasn't a real baby yet and he seems completely over it now especially as I am pregnant again, whereas I still get tearful about the baby I lost and feel something missing.

I had a need to talk about it all a great deal, and cry a lot, whereas DH didn't seem to be as affected that way and found it hard to know how to support me.

I think it's normal for them to feel differently.

This next few days will be horrible, you just need to plod through it all, but things will start to get better soon I am sure.

Life's so bloody unfair isn't it?
Thinking of you at this sad time.

Sorry if this is the wrong time to suggest this but there's an organisation called SOFT (support organisation for trisomies) who could help you through this difficult time.
Hugs from me. I had to terminate twice at 17 weeks and it really felt that the future had been stolen from me.

No wise words - unlike many of the other fabulous posters here. Just wanted to add my support to you and your family

Hi everyone, so sorry, didn't see all these posts. Last few days have been a blur. Am going in tomorrow for a surgical. Was feeling alright yesterday, better for knowing what was happening and when.

Today have totally crashed, scared of the procedure so want it over but scared I'll feel worse afterwards. Also found out it's at a day clinic so lots of people there having all sorts of procedures. Also DP isn't allowed to stay so won't be there when I go to sleep or wake up.

I'm going back to work on Monday, have already had nine days off. At the moment I'm fairly catatonic and can't seem to rouse myself from the sofa so not sure how that's going to be.

Just wanted to say a final thank you for everyone who shared their experience and sent good thoughts. It's hard to imagine that words from strangers will make a difference but they really do.

If anyone is reading this in the future (like I obsessively read old threads) then I hope it goes well for you and will try and repay the favour.

Thanks all xxx

Good luck OP

I have just read this thread. So very sorry OP, I can relate, sort of, and the waiting is terrible, the not knowing is terrible, the knowing is a bit of a relief but also terrible. My OH could also not do anything right while I tried to deal with it. :(

I wish you luck for tomorrow. And peace. xx

Sweetie, go back to work when YOU are ready. It'll still be there when you do.
Take your time and give yourself a break. xxx

Oh love, I'm so sorry it turned out this way. For what it's worth, I think you're in between a rock and a hard place and you've made the only decision you could in the circumstances.

Please please please don't rush back to work. I know the feeling of wanting to get on with things, but if you do it too soon, you run the risk of not having dealt fully with what's happened. You need to heal, and it takes time. I highly recommend seeking support from ARC, when you feel ready. x

I'm so sorry you and your DH are having to go through this. I hope that you can continue to support each other.

I hope you don't feel pressurised to go back to work too soon. A few years ago I had an ectopic pregnancy which needed surgery. Physically I only took a couple of weeks to recover, but the wonderful nurse arranged (without any input from me) to get me signed off for 6 weeks and I needed every minute of that to get myself on an even keel emotionally. So please, take more time if you need it. IME people were more supportive than I could have hoped.

Wondering how things are Monten, I hope you are coping ok.

I think it's best if you have more time off to recover from the surgery. you need to rest and grieve now.
I'm so sorry again for all you two are going through.

big hugs

hiya i just read your story and wanted to send you a hug and my thoughts of support.

i once had to make a decision which was traumatic and almost other worldly.

just want to let you know that its ok the other side. x x x