Cvs! Got 1 in 5 chance of E or P syndrome

[Rathernotsay88]

Hi all. I had a phone call from screening center about my blood tests at scan and my World is crumbling around me. 1 in 1800 DS but 1 in 5 chance ED or P. NT was good at 2 !
Been referred to Sheffield hospital for a CVS and just after some advice.

1. What is the procedure like?
2. Success stories
3. Time scale

How long after been referred did you get a phone call from hospital with appointment and how long for results.

Thanks in advance very nervous and upset all I wanna do is curl up and cry!

Sending a big hug.
I can't answer timescales etc, but can tell you about the CVS.
I've had 3 in my 2nd, 3rd & 4th pregnancies.
My DS1 has Downs, diagnosed at birth. He is 18 so screening was very different then and I was only 26 when I was pregnant.
The procedure is absolutely fine, the staff were lovely and very experienced.
They pop some local anaesthetic into the skin and insert the needle. There is a bit of a pressured push to go into the uterus all of which I could see on the screen as they were scanning.
My husband was with me holding my hand.
I went home and rested.
Obviously different reasons for going for the procedure as I opted for it and there was no harmony testing back then (2004/2009/2010).

They all came back clear of genetics issues.
That said I wouldn't change my gorgeous DS1, a birth diagnosis was a terrible shock and a whole different story. We all adore him and he is thriving.

Sending hugs and strength, you'll be fine.
Keep calm, keep busy leading up to the procedure.
Life can be a rollercoaster, cling on.
I've just had breast cancer surgery so have been doing that again myself recently, I'm hoping that the outcome is a good one for you.

Aww sorry to hear that about the breast cancer. Wish you all the best.

ive just had a phone call from the screening team to tell me I will hear from Sheffield in 48hours if not I need to ring them to chase it up.
Meanwhile the thoughts that go through our heads are awful aren't they :-(
Whats a harmony test? Is that another name for cvs? Or private testing?

Also happy to hear your son is thriving. Any child is blessing in my eyes ❤

I've heard it's more the age factor that makes it high probability of baBy born with a syndrome. I'm 34 and had a misscarriage in April this year then fell pregnant very quickly afterwards. This pregnancy has made me super anxious already before all this

I hope that you are doing ok Rathernotsay?

Rathernotsay88 whoops. Hope you are holding up ok x

I have my cvs tomorrow 12pm. Very nervous but relieved I gave an appointment straight away.
I'll give you updates 😘

I'm glad you haven't had to wait long.

If I remember correctly we were informed of the early results 48 hours later in a phone call, with definite confirmation at 4 weeks in a letter.
Like anything (as I've found this year again!) the waiting is the worst bit.

Big hugs x

So I've had it. Scan first and saw my baba again and heard heart beat everything looked perfect even the herniation baba had at 11 week scan had gone

Cvs was horrific i was actually sick during so they had to stop. Threw up my maccies breakfast all over. But there was no way I wasn't having this test. So went at it again!! So two puncture holes.
Also had bloods and anti d vaccine cos rare blood type.
Now I just have to await results don't want to get my hopes up too much as I've just had a bath and saw a tiny blood jelly blob in Bath. Hopefully nothing to worry about.

My bed Is calling me so 😴 😩
Attached are today's findings NT measurements gone down to x

Thinking of you OP. Yes the cvs can be very intense. Really sorry you’re having to go through it. My experience was that the results were pretty quick, less than 48 hours til we got the call. Hoping all is well for you. X

By the way my baby had Edwards and the doctor said it was very clear from the scan that was the case, lots of clues there. NT much higher too. Obviously I’m no expert but hopefully the good scan is a good sign for you xx

Thank you so much for commenting. Sorry about your sad news it really is terrifying.
As for been sick that's normal for me lol it was when I saw the needle.
The only thing that's worrying me now is if iv jeopardised the test myself by been sick and the procedure repeated.

Ergh women why do we overthink so much and torture ourselves!
Hopefully get quick results like you did. I'm back to work Monday in this heat wave °°
X

Hello, I just wanted to wish you lots of luck for your results! I had a CVS on Thursday and am waiting for my results, fingers crossed I get them tomorrow but secretly wishing I could just find out already! (I can’t even tell you how many threads I have read through over the last few days - exhausted isn’t even the word!) The waiting is just the worst thing.. my odds have come at 1:36 for DS but I am still crossing everything and feeling hopeful for a positive outcome for baby! ❤️ X

Baby has edwards syndrome I'm absolutely devastated and no idea what to do with myself. I got the call at work and I've just up and left.

Thanks for messages and advice
X

What a shock for you @Rathernotsay88

Take a some deep breaths and be kind to yourself - have you got someone with you?

I'm sorry I know nothing about Edwards Syndrome, but I'm sure others will be along who do

So sorry to hear your news.

My eldest was diagnosed with Edwards at a late scan at 23 weeks. It was a horrendous shock. His diagnosis was very severe and we were advised he wouldn't survive to birth.

We took the devastating decision to end his life as painlessly as possible rather than wait for him to die in the womb.

He was much loved and wanted, making that decision was very hard and painful for us. But the consultant was clear that due to the severity of his condition he could not survive outside of the womb and was unlikely to make it to full term. We felt the decision was what's best for him.

One of my colleagues had a baby also with edwards. They didn't discover until birth as it was missed on the scan. Unfortunately she passed away after 24hrs.

I am so sorry you are in this position, Edwards is one of the hardest diagnosis to receive. Thinking of you x

I’m so sorry to hear this @Rathernotsay88. As I mentioned I had an Edwards diagnosis in November last year, it was spotted at the 12 week scan. Here to talk if and when you need to. Thinking of you this evening and please know that absolutely anything you’re feeling is valid.

Rathernotsay88
So sorry to hear your news. Big hugs x

Please can anyone help who may be in similar situation.
iv been under consultants from early pregnancy, due to early miscarriages. I’m 24 week tomoz and Iv just had growth scan where consultant is sending me to lpool womans where I need a test where they take sample from sac but this can cause miscarriage. She mentioned chromosomes issues and maybe just genetic . But to be certain to have this . Apparently I’m on 3rd centile . I had all tests for downs etc at 12 wk where was low risk I’m just so worried 😦

I need this test cause baby on 3rd centile z

@Sergiomel08 please start a new thread, you will get more answers with your own thread.

Op, I am so very sorry to read your update.

god, I am SO sorry, OP

devastating doesn’t even cover it.

Hi guys. I had termination of pregnancy on Saturday it was quite possibly the worst day of my life it was so traumatic. I know I made the best decision for me, family and baby but my god it hurts!!
I was given a memory box which holds footprint of my baby boy. I still haven't opened the box I just can't bring myself to see what's in it. All I want to say is thank you for kind words, love and support I'm absolutely heartbroken.

@Rathernotsay88 i am so, so sorry. It sounds like you had medical management which I had and the experience was so shockingly intense. Sending so much love. If you want to talk about it at all please, please message me, it’s a huge thing to go through and such a burden to carry. You’re incredible for surviving this. x

I'm so sorry to hear that op.

You took the pain of your son and set him free, by paying the greatest price imaginable, the lifetime pain of the loss of a child, and you did this because you love him, you love him so fiercely you took his suffering and carried it for him.

So sorry for the situation you're in.

My loss was 23 years ago and I still think of him often. Grief stats with you, sometimes it's raw and wild, other times soft and reminiscent.

This year I had his feet prints tattooed on my arm. I wasn't ready until now. I have also had one put on a Pandora charm. You will cherish the feet prints when you are ready.

Take the time you need to grieve, be kind to each other and accept that your grief may be at different stages at times and that is still ok. I hope you get an opportunity for counselling as I found that useful. I was able to say things there that I didn't want to share with others.

For a time I struggled with the fact what I'd chosen was right for my family and the baby but didn't feel right for me. It hurt me a lot having to make the decision, but it was the right decision. It saved my much loved and wanted son from pain and suffering before he died.

Thoughts are with you xx

Hi @Spyke
Sorry to see your diagnosis of Edwards, if you dont mind me asking- did you have testing or soft markers? We've been given a 1 in 2 chance of a chromosome abnormality, the 12wk scan also showed a strawberry shaped head, amongst other things