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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Abnormal nuchal screening test

52 replies

Evianfash40 · 04/07/2019 07:04

I went for my 12 week scan for my first baby yesterday and received the bad news that during the nuchal screening there was a lot of fluid around the baby and showed an abnormal result. I just want to see if anyone else has experienced this as it's my first and I found the whole thing really heart breaking at the hospital. I had to wait 40mins for my scan and I knew immediately something was wrong, I shouldn't have gone on my own but I wasn't expecting anything to go wrong having had a good private scan at 9 weeks. The sonographer was very quiet and then just said there was a lot of fluid & skin oedema which was prominent suggesting high chance of chromosomal disorder - downs etc. She then asked if I still wanted a photo, like she'd already written my baby off, then gave me a picture which was not a great angle but I felt like she was dismissive and insensitive - she didn't perform rest if scan - I didn't get to see what was on the screen. I was left in waiting room crying whilst waiting for my blood test as it was the combined test and after I had it they moved to a private room whilst I waited to see consultant. She did another scan which confirmed what the first sonographer had seen and advised me to wait for blood test results which should come to today and to then take the cvs test tomorrow. I am so devastated - and also frustrated with how the hospital handled it - I have no nuchal measurement - so I don't feel like I can put into context how bad it is. I just felt the consultant had totally written off my pregnancy which suggests what they saw was really not viable but no-one has explained to me what they could see. I found it hard to look at the screen because I could see what looked like a normal baby, beating heart with feet and hands. I'm so upset, has anyone else been through this?

OP posts:
ValleyoftheHorses · 09/07/2019 06:04

I’m sorry to read this. Was it the consultant doing the CVS? I’d say complain but that’s a lot of stress on you and you don’t need the pressure.
Could you go to the GP for a chat and get some sedatives? Even a sedating antihistamine- I think some of those are safe enough. Sleep would help.
Thinking of you

Weathergirl1 · 09/07/2019 10:55

Sending you best wishes OP and I hope you get proper support. That experience sounds horrific at an already stressful time - totally unprofessional. I second what a PP has said that if you feel you can, you really should be contacting PALS about that.

Evianfash40 · 09/07/2019 20:35

Thanks so much for your message @Pinkflower23. You must be so relieved to have a clear cvs result - the worry is horrendous. It sounds like you and little lady are doing great? When is your 18 week scan? Let us know how it goes, will be thinking of you!
I am under fetal medicine at Whittington hospital in London but care is hit and miss. Some of the nurses are brilliant, found the consultants to be quite insensitive. I'm just waiting for cvs result on Thursday and taking each day as it comes. xx

OP posts:
Evianfash40 · 09/07/2019 20:44

Thank you for your messages @ValleyoftheHorses @Weathergirl1@NEtoN10 Hospital has been really hit and miss - the nurses have been lovely and couldn't have been better, but the consultants handled it very insensitively - when they were laughing amongst themselves about not being able to find an angle to do the cvs test I was really upset, luckily my other half was with me and told them we weren't making any decisions without having it done. I don't have the energy to complain formally. We are just waiting to receive the results on Thursday. Expecting the worst but praying for a miracle. xx

OP posts:
NEtoN10 · 09/07/2019 20:53

Oh I had a horrid horrid experience with my scan at the Whittington! After cvs we transfered to UCLH

My friend also found the scan consultants awful .

Poor you

sloaneBear · 09/07/2019 21:21

We also had awful experience with the Whittington. We had our next many at UCH and it was a different world.

So sorry to read all this OP. Keeping you in my thoughts for Thursday.

Pinkflower23 · 09/07/2019 21:22

Hope you are well,
My 18 week scan is next week. It’s a cardiac scan so I’m just praying her little heart is okay.
Good news also, the genetic condition found on the cvs has been found in my partner, because he has no symptoms, he must be a carrier. She will also be a carrier with a less that 10% chance of her having any symptoms. Worst case scenario she may just get headaches after certain meals. I now feel like I can start to enjoy my pregnancy. I still haven't told a single friend, family member or work that I’m pregnant. Providing my scan goes okay next week I will make my announcement. It’s going to be a huge weight off my shoulders.

I’ll be thinking of you Thursday, let us know when you get your results. Xxxxx

Evianfash40 · 10/07/2019 22:18

Just wanted to share - I got my cvs results back today and sadly my little girl has Turners syndrome and won't survive the pregnancy. I was expecting this outcome but it's still heartbreaking. In some ways it makes it easier to make the decision as I know I'm doing the right thing, but its just so hard when I've been nurturing her for the last 14 weeks, and I don't want to give her up but I know I have to. Whittington rang me earlier and said it was too late for a surgical termination on the NHS and I'd need to arrange myself - I'd pre-empted them being totally shit and unhelpful so I'd already contacted Marie Stopes this week and I've managed to arrange a consultation with surgeon tomorrow. Absolutely terrified but just need to get through the next week and take each day as it comes. x

OP posts:
SylvanianFrenemies · 10/07/2019 22:18

Wishing you the best for tomorrow.

Sorry your care has been so terrible. It's the last thing you need.

NEtoN10 · 10/07/2019 22:49

Oh I'm so devastated for you and so so angry at the Whittington!

No words can express, I'll keep thinking of you 💐 Beautiful, brave woman x

anitagreen · 10/07/2019 23:23

So sorry to read your update I hope in time you can heal you are incredibly brave x

Teddybear45 · 10/07/2019 23:42
Flowers
ValleyoftheHorses · 11/07/2019 06:03

I’m so sorry. Flowers
As you know I had to go to Marie Stopes and they were very good. Thinking of you today xx

KWordy · 11/07/2019 07:20

So sorry to hear about your results. What an awful time for you it has been. My heart totally goes out to you. Will be thinking of you. 🌸

Pinkflower23 · 11/07/2019 07:43

I just cried reading that, 😢 so sorry.
Thinking of you. Xxxxxx

Weathergirl1 · 11/07/2019 07:44

Hope it all goes well for you today and you get the support you need. I am so 😠 for you about the way this has been handled at your hospital. 💐💐

Sandybval · 11/07/2019 07:51

So sorry to hear this OP, and absolutely disgusted at the treatment you have received. If you ever feel in a place to (and understandable if not) then please do feedback; some antenatal care is absolutely disgraceful. Hope you have a good support network around you and will be thinking of you.

Grandmi · 11/07/2019 07:54

Am so sorry for you and despair at the insensitive care you have received 👿I shall be thinking of you today 💐

RandomWok · 11/07/2019 08:01

Oh you poor thing. So sorry to hear that. Be kind to yourself x

kittycat01 · 11/07/2019 08:07

@Evianfash40 Thanks

catmummy1 · 11/07/2019 08:18

Thinking of you and your partner! Nothing I can say can make this any easier. Remember to talk to each other while going throught this and after, don't hold anything in!
Much love X

SylvanianFrenemies · 11/07/2019 11:20

@Evianfash40 I'm so sorry to hear this. From my own experience it helps a little when you know your baby has little chance of survival, and I hope you find some comfort in this. I hope your consultation goes well.

The ARC-UK board for parents who have lost a baby in these circumstances is very good. Flowers

My3boys9910 · 11/07/2019 13:17

You poor thing...From start to finish the hospital sounds Like theyve been really insensitive to you...Sorry if I'm being intrusive...but my freind went through the same situation & her daughter was born with turners syndrome...she has special needs...But she did survive?Is there something else other than turners to say your baby wont make it?Again...I'm so sorry your going through this Flowers

memyselfandeye · 11/07/2019 13:21

Just wishing you strength and love during a really difficult time.

changingnam · 11/07/2019 13:54

Sending my best wishes to you Thanks

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