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7mm NT & CVS support needed

(17 Posts)
Bbf25010320 Sat 24-Oct-20 11:42:32

Hello,

Me and my husband are expecting our second child, we went for our first scan at 13 weeks and 5 days on Wednesday only to be told our NT was 7mm, the scan ended quite quickly after and we were sent to a private room and given a ton of information about CVS/amnio tests and given an appointment with Fetal medicine this morning.

This morning we met with a consultant who rescanned baby and found fluid around the heart and lungs, told us there is a 1 in 5 chance baby has Down syndrome, Edwards and Pattaus and therefore carried out a CVS. We were also told there is a 10% chance baby won’t make it to term and a 50% chance something is wrong with baby. My HcG levels were raised but PAPP A were normal.

My heart has broken into a million pieces. Me and my husband are fit and healthy, as is our daughter and we never expected this devestating news that our baby might be poorly or we may he asked to considering ending a much wanted pregnancy.

Can anyone share a similar story or give us any hope at all of what we could be facing? Also any honestly about our outlook however bleak it may seem. I’m so scared and shocked and feel like I’m stuck in a terrible nightmare. Hearing real life stories somehow brings me comfort.

Xx

OP’s posts: |
Festivemovie Sat 24-Oct-20 11:59:03

Hello we are currently going through it and it was massive shock that floored us to be honest. However you will pick yourself up and keep moving forward and face the next set of test and obstacles. We completed our cvs last Wednesday and currently awaiting result. Our first scan nt was 4.7 and second it's now 7.4 I go from trying to stay busy to feeling like I'm having a nervous breakdown. There are a few of us on here currently awaiting these results feel free to ask any questions or simply for a chat xx

Bickles Sat 24-Oct-20 12:07:12

Try and contact www.arc-uk.org/ ARC charity for support.
Your story is the same as ours except it was our first child, unfortunately it was trisomy 21 and we had a surgical tfmr at Marie Stopes.
Please don’t think this is your fault- how healthy you are has nothing to do with it. It’s likely to be an accident of chromosomes at conception and the only factor is maternal age. Also I was only 31 when this happened to me so not even that old!
I had a healthy son at 34 so all is not lost.
flowers

Bbf25010320 Sat 24-Oct-20 12:26:07

Thank you @Bickles & @Festivemovie for taking the time to reply to me.

@Bickles I am so sorry to hear what you went through. Women are so strong and resilient, even the CVS testing is traumatic. I’m so pleased you went on to have a healthy little boy.

I am the same with my emotions luckily my 2yr old is distracting me and keeping me busy but I have moments of positivity and then moments where I completely fall apart and wonder how I will get through the next stage!

I have been in touch with ARC they have been incredible with explaining doctors jargon and explaining everything to me.

@Festivemovie have you not had any results back yet? Ours was yesterday and told the main 3 trisomies will be back by Mon/Tues, I pray it won’t be longer I’m already losing my mind waiting.

Xx

OP’s posts: |
Bbf25010320 Sat 24-Oct-20 12:27:55

@Festivemovie same time you, i am always here to help or chat if you want to talk to anyone in the same boat. Nobody else can understand the complete turmoil this creates. My fingers are crossed for your results to be clear xx

OP’s posts: |
Festivemovie Sat 24-Oct-20 12:56:52

Hello no results back yet and they lost my bloods two weeks ago from nipt tests and where so non chalant about it like it was nothing. When we first found out this upsetting information a few weeks ago was told by the midwife my phone is always on any questions.. we are always here for you blah blah she hadn't answered a call or text since. When the nhs works its great, when it doesnt it's awful. My cousin who works in the nhs told me to go private for my testing three weeks ago I didn't listen and am frustrated that I could have had results weeks ago if I had listened sad

Bbf25010320 Sun 25-Oct-20 08:27:27

@Festivemovie that’s so awful for you, I can’t believe these things can happen when you are already going through so much!!

We were similarly disappointed with the NHS when the nurse who saw us after our scan was very cold and made up feel like a nescience for asking lots of questions - understandable. Luckily when we went for the CVS the lady was amazing and I felt like I had my mum there she was so nice. Sad my husband couldn’t be there, going through all this during COVID makes it much harder.

If you haven’t tried ARC they are incredible! They talked me through all my bloods and explain some of the ‘doctors speak’ on my scan pictures which helped me to understand much better. They have been a huge help with every question I have had, and whilst deep down the answers haven’t changed our situation sometimes you just want to feel like you are doing something to get you closer to the answer, even if your not sad

Please do let me know how your results go, thinking of you xxx

OP’s posts: |
taraRoo Sun 25-Oct-20 18:25:34

Hello

I'm going through it too. My odds are not as high as you so I've been advised to have the non invasive harmony test. It costs £350 but I can do it through my nhs hospital. If this comes back high chance then it will be an amnio. I'm terrified naturally. The test is tomorrow then it's 10 days of waiting.

It's my second child too. Very difficult pregnancy so far. Been very very sick and exhausted.

All the very best to you. Happy to chat if you need some support x

Festivemovie Sun 25-Oct-20 20:01:07

Thank you everyone xx I will post my results tomorrow of they come through . Pls let me know how you are doing too much love to you bbf and tararoo xx

taraRoo Sun 25-Oct-20 20:35:48

@Festivemovie good luck to you xx

Bbf25010320 Mon 26-Oct-20 11:35:36

Thank you so much ladies, it’s the only comfort to speak with other ladies in a similar position. I think even when you tell friends and family they do not realise how truly traumatic this is.

I hope to have my results by Wednesday so will also post them, I am not feeling hopeful the more time goes on I cannot see how it cannot be that something is wrong with the baby 😭.

Hope you are both ok today and keeping busy xx

OP’s posts: |
taraRoo Mon 26-Oct-20 12:54:35

@Bbf25010320

I know what you mean about telling friends etc. Most of them just say 'there's still a chance it will all be fine' . There is. But when it is your body and your baby you sort of need to prepare for the worst.

I had my nipt test today. I'd been holding it in all weekend but lost it a bit when I got to the hospital and the reality of ' oh shit my baby might have downs syndrome' hit me.

Good luck to you on Wednesday. I hope everyone else is coping ok too. It's wonderful to be able to talk openly about this on here.

Bbf25010320 Mon 26-Oct-20 18:34:04

Just to update the thread we got our results back today which was incredibly quick. We sadly recieved news that baby has tested positive for trisomy 21. We are so heartbroken and so lost as to what we want to do from here, there is so much to consider, as well as the doctor telling us the markers on the lungs and heart may mean baby will suffer complications further into the pregnancy. How can life take such sudden turns and take you down paths you never imagined. There have been many tears in our household this evening. We also found out it’s another girl 💔

OP’s posts: |
taraRoo Mon 26-Oct-20 20:07:52

My goodness. I am so sorry. I can't imagine what this feels like. Thinking of you and your partner as you face difficult choices ahead. thanks

soontobe6 Wed 28-Oct-20 07:55:54

Hi firstly my heart goes out to you as I appreciate how scared and heartbroken you feel as I have been in your situation.
We choose to continue with our pregnancy and our son with Down’s Syndrome is nearly four.
Despite having some health issues and being slow to reach milestones he does not suffer, he is happy and loved.
We don’t regret having him but appreciate without judgment that other families may choose a different path.
I will keep you in my thoughts and prayers.

YumLemonCheesecake Thu 29-Oct-20 11:52:20

Hello I am probably no help but I didn't want to read and run.

We had our scan at 12wks and had a nt measurement of 4.7mm followed by blood results which were not promising. We then had a CVS procedure which increased the nt to 5.8mm, during the scanning process the consultant also discovered heart issues, he warned us this was a serious problem and most likely not operable.

We got the initial results back that unfortunately our baby girl had trisomy 21 and heart issues.

We then made the very difficult decision to have a 'termination for medical reasons' - a phrase I really dislike.
Our baby girl Rosie was born sleeping nearly 2 weeks ago, to begin with the first few days were impossible but slowly the days are getting easier even though there are still a lot of tears from me.

We are very lucky to have a healthy 2 yr old little boy, I desperately want/wanted him to have a brother/sister, but unfortunately this wasn't our time.

Whatever your decision is there is so much support out there. If you ever need to message me feel free. x

phbalanced707 Sat 31-Oct-20 17:06:21

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