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

139 replies

Monten · 08/01/2014 18:37

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.

OP posts:
Monten · 09/01/2014 09:58

Thanks everyone, you really are all so kind and it means a lot. Am so sorry for everyone else who has been through this.

Hanzym - I read your story too on the boards. I'm so very sorry and how awful for you that it took so long to get the diagnosis. Today will be a very sad day. Thinking of you and sending you good thoughts.

OP posts:
ZingChoirsOfAngels · 09/01/2014 10:31

how are you doing Monten?

I keep thinking about you, hoping you get some good news.

so sorry for everyone's losses Thanks Thanks Thanks

Cinnamon2013 · 09/01/2014 10:40

I'm so sorry to hear what you are going through, OP. No advice but sending strength for you at this time. X

MrsT2007 · 09/01/2014 11:43

So sorry xxx

I've been there too, in 2012 I had TFMR as baby had downs with severe heart & bowel complications and we were told would not survive to term.

It's such a distressing time, I felt like a month of my life had been sucked away with tests and waiting.

Lots of love xxx

I have gone on to have a healthy daughter from my next pregnancy xxx

AliBingo · 09/01/2014 12:10

Hi again Monten

I forgot to say, my best mate was 7 months pregnant at the time of my TFMR which made things a bit weird but I didn't find it that bad in the end - I had thought maybe I would find it hard seeing their baby but it was actually mostly nice and not too painful so hopefully the same with your SIL's. (My baby was supposed to arrive when friend's was 3 months old so for long while I kept seeing her little one and thinking that my own baby should be this old by now etc).

I also forgot to mention last night, after my TFMR I didn't see my baby and I didn't find out if it was a boy or a girl. For some reason the gender really haunted me. When I had my second CVS for this pregnancy I asked the consultant and he found out for me. Of course it brought it all back but I was also so relieved and pleased to know, I have no idea why but it was/is really important for me to know that it was a little boy I lost. Just thought I'd mention it in case it's useful for you, as in the trauma of it all I forgot to ask at the time. Hopefully you won't be facing a TFMR anyway, fingers crossed.

Ali

InfiniteJest · 09/01/2014 12:17

You sound absolutely lovely, I'm so sorry you're going through this. I don't have anything particularly useful to say, just wanted to post my support Thanks

adaloveslace · 09/01/2014 12:18

Hi Monten,

I have fairly recent experience of getting a bad result from the nuchal and having to have a CVS so I have some idea what you're going through. The wait is horrific. It was the longest, toughest 48 hours of my life. I hope your results come in soon and that your baby surprises everyone. We had a good outcome in the end but whatever happens, you'll find lots of support on here. Thanks Thanks

Pawprint · 09/01/2014 17:53

It's so sad to have bad news about a much loved baby you so looked forward to having Sad

Ali I didn't ask the gender of my baby with Trisomy 13 :(. I think it was because the consultant's letter said that most of the chromosomes were duplicated and I was frightened the sex chromosomes would be ambiguous :(

It's a dreadful thing to go through :(. I still miss my four miscarried babies :( I named them all. It was a terrible time.

Monten · 09/01/2014 17:54

Just checking in, thanks for the messages.

Off work again today just can't stop googling. It seems that taken individually, there is a chance of a positive outcome with all my bad results. But then I remember that all the results added together is what i am dealing with.

The sonographer not being able to see a stomach is bugging me. I was so stunned I didn't really question her. But after googling it seems that it's not unusual that they can't see the stomach at this stage. I'm 11 6 by the way (I think - again I was so stunned I forgot to ask my dating results). A lot of people on here have mentioned the charity ARC and I know I should just phone them and ask their advice but the idea of picking up the phone and speaking about it seems really daunting.

I think I'm going to go back to work tomorrow, can't stay at home forever. They might phone with my results while there though, that won't be great. But I guess I'll just get myself to a quiet place.

Adalovelace - so happy to had a good outcome, its so lovely to hear when people have good news.

Hanzym - thinking of you today

MrsT - so sorry you've been through this too but lovely to hear you have a healthy daughter. I'm just trying to hold onto that thought. I went and saw a friend today who sadly has been in a similar situation and got to cuddle her 3 month old. So gorgeous.

OP posts:
Monten · 09/01/2014 17:56

Thanks Thanks Pawprint

OP posts:
Pawprint · 09/01/2014 17:57

Thanks so much. M

MonsterMunchMe · 09/01/2014 18:07

I'm sorry you're going through this monten

Late 2012 I went for a scan and found out my baby had anacephaly, with a 0% chance of survival. I could wait for nature to take it's course or have a TFMR.

I choose the TFMR as I was 13 weeks by then, and the thought of it happening later on in my pregnancy or having a stillborn terrified me.

I completly understand what you mean about the curtain. I felt very very alone and still do, I don't know anyone who has gone through anything similar, and it still hurts. My D P left straight away as he couldn't deal with it so I haven't gone on to have another baby, but I do have 6yr old DS who is healthy.

My cousins DP was due a couple of weeks before me and that was very painful. Since then she's had the baby and is pregnant again. My sisters pregnant, so are 2 of my friend and my best friends sister. It does still sting even now.

I hope everything works out for you and my thought are with you at this time. Whatever decision you make will be the right one xx

AliBingo · 09/01/2014 18:10

Pawprint I never even thought of that, that would have made everything worse if they hadn't been able to tell me a gender. As it is, I did feel comfort from knowing it was a little boy I lost.

Sorry to hear about your losses. I don't think you ever really get over a loss do you, I still feel as though something is missing even though I am happy about my new pregnancy. I think I will always feel a sense of someone being missing.

Monten good to hear from you, I hope work goes ok if you decide to go back in. I think I wouldn't be brave enough to go, although I did end up back at my desk 2 days after the TFMR as I wanted the distraction, but I was WFH.

ARC were good when I contacted them but that was by email after the TFMR. We didn't see any point in contacting them beforehand as we knew what we would do if we got a bad result, plus I didn't really want to talk by phone to them. Although thinking about it I think you can email them too, may be worth a look if you think it would be useful for you.

Hope you get your results tomorrow; I think I did get mine back in less than 48 hours the first time so you never know. It saves some of the agonizing wait, which was the worst part in some ways.

LEMoncehadacatcalledSANTA · 09/01/2014 18:18

I hope you get some clearer results soon Flowers

Pawprint · 09/01/2014 18:22

Thanks Ali - ThanksThanksThanks

Ledkr · 09/01/2014 18:50

Hoping for good results or at least some clear answers.

twentyten · 09/01/2014 20:49

ThanksThanksThanks

ramonaquimby · 10/01/2014 00:16

Hi Morten,
Similar as in bad, at scan was told of increased nuchal measurements and increased fluid around the brain and also heart problems. I was sent to a specialist hospital elsewhere in London where I was told that the risk of Down's Syndrome were very high alongside Patau's and Edward's syndrome too. I can't remember the numbers, sorry. Also had CVS, and the option of genetic counselling as and when I wanted it.

Hope you're ok.

I already had DD1, and had DD2 and DD3 very close together, DD2 was born a year to the day of the due date for the little one we never had xx

ZingChoirsOfAngels · 10/01/2014 10:02

how are you today? I keep thinking about you

Hanzym · 10/01/2014 10:23

Hi Monten, thinking of you today and hope you get some results
Xxx

MrsT2007 · 10/01/2014 11:19

Hope you get news today

We found out the gender of the baby, and we have a rose in the garden dedicated to him. That first summer afterwards it was a real healer to tend it for him.

Cherryblossom11 · 10/01/2014 11:20

Thinking of you today Thanks
Hope you get some more clarity of results today.

daftgeranium · 10/01/2014 21:10

So sorry to hear of what you're going through. I had a similar situation in October at the 12 week scan and we had two frantic, awful weeks of not knowing what was going on before the baby died at 14 weeks, just before we were to have the CVS. I got to know Dr Google very well!

Our little girl had Edwards syndrome, so would likely not have survived. We had blood tests on the genetics and it was confirmed that it was just a chance occurrence.

My heart goes out to you for the hurt you must be feeling. Whatever happens, whether positive or negative, it IS shit, but have faith you WILL get through it. Sending hugs and Thanks

LondonNinja · 10/01/2014 22:08

Monten, I hope things are clearer for you. Thinking of you.

Tranquilitybaby · 11/01/2014 00:12

Thinking if you, hope you know more now. X