Dreaded phone call

[FrogsHiccups]

Please send me your positive stories!

I had the dreaded phone call this morning:
‘Mrs Frogs, your Downs Syndrome screening has come back as high risk’.

I’m right on the cusp as what they determine as high risk - 1 in 139. NT measured 2.9 (although the sonographer was initially getting 3.44 and another sonographer had to come in, but 2.9 is what they landed on) at 11 weeks + 3 days. I don’t know what the other levels were. I’m 32. No IVF. But do have PCOS.

NIPT booked for later this week to begin with.

I have two daughters.
With the first one the risk was 1 in 249.
Second one it was 1 in 89.
With the second one I had a CVS test.
Both children did not have Downs.
My friend had a risk of 1 in 3000.
Her daughter has Downs - she was the one.
I should also say that now that my children are at uni - and I have been a parent for over 20 years, there are much worse things than having a child with Downs.
Downs Syndrome just happens to be one of the things that we have tests for.
Having a child is always a massive leap of faith.
I don't want to sound negative - actually just the opposite.

My risk was 1 in 19 with the combined tests. My hormones followed the downs pattern and I was late 30s, but NT was normal.

Two NIPT tests showed no issues but I decided to do the diagnostic anyway (CVS test) which confirmed here was no risk of Downs and it was right - DC is now nearly 3 and perfectly healthy.

Sorry you're going through this. I have a 1 in 5 risk of downs and a high risk of Edwards and patau. I have been googling like mad and have found that even people with my shitty odds tend not to have an issue in the end. In comparison you are much less likely anyway so hopefully everything will be OK! The nipt is a good choice of next step, the waiting feels like forever though! Best of luck, I'm sure you'll be fine.

I have a 1 in 5 chance for Downs and a 1 in 99 chance of Edward’s and Patau’s. NT was 5.5mm. Had an attempted CVS last week and going for another attempt this afternoon.

I’m sorry you’re going through this worry too. Everything crossed.

Good luck today @user1488481370

Hi @DoctorBambino and @user1488481370

Sorry to hear you’re going through this as well! It’s all just a horrible unknown isn’t it.

We’ve been trying for 2 years for this baby, in that time I’ve had 2 miscarriages, a diagnosis of PCOS and a gynae referral and when I finally start to relax and get excited about this pregnancy this comes and punches me in the face.

But I’m trying to be pragmatic and I’m now working off percentages rather than 1 in ###. Makes it sounds much more favourable I think. Let us know how you both get on!

Thanks @viktoria and @isthisouting
It definitely gives me some hope!

Hi OP,

I am sending you all the luck in this world, stay strong and positive.
Like a previous poster has said having a child is leap of faith. Good luck and try to stay calm.

Hi OP,

I received the phone call back in May at 14 weeks that baby has a 1-101 chance I’m 27 and no health issues so opted for the NIPT but I wouldn’t have wish the anxiety it causes on anyone and wouldn’t opt for any screening tests in future pregnancies. NIPT came back low chance and I am now 28 weeks with a little boy but I recommend a a page called positive about downs for a hand hold they were brilliant good luck xx

Hi @FrogsHiccups I also have PCOS and am currently in a similar situation. Just wondering how you got on with the NIPT? X

Hi @HopefulRose
All fine so far. I had the NIPT, did it for downs, edwards and patau’s (because while you’re there, you might as well). Came back as ‘low likelihood’ for all three. The results came back in a week as well, I was told to expect a 2 week wait.
I had a private scan at 16 weeks, which showed everything as to be expected - the sonographer said all the measurements were text book and nothing looked unusual. And I’ve got my 20 week scan in 2 weeks.

I hope everything goes well for you. It’s such a stressful time when you need as little stress as possible! But I hope that helps somewhat 🙂

Thanks for your reply @FrogsHiccups and that’s wonderful news! So nice they came back sooner too.

Thanks, it’s so unbelievably stressful :(