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Original poster

Grater than 1:2 for Down Syndrome - Combined Test

20 replies

Littlehoppe · 13/02/2021 22:28

We went for our Dating Scan and combined screening test last week. The scan was fine with a slightly big NT of 3mm. The Sonographer did not even mention it. We were over the moon...
Unfortunately at the beginning of this week I've got a devastating phone call saying that my blood test results had put me at high risk for the three trisomies being the risk for high syndrome greater than 1:2. I had CVS on Thursday and now am waiting the results. With these odds against us I am preparing myself for the worst.Sad
I suppose the purpose of this message is to connect with people who have been in similar situations, with positive or negative outcomes so it might help me to go through this.
The pain is so intense. The waiting is unbereable. I feel I am losing my mind...

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Mummy2O · 14/02/2021 00:35

I am so sorry you are going through this. I hope you get your results back quickly. The waiting is torture.

I found keeping busy helped. My cupboards have never been so organised.

Original poster
Littlehoppe · 14/02/2021 08:10

Thank you for your response @Mummy20.
I tied up everything during the first days after the phone. It did help. It relieves stress,kills time and gives you some satisfaction. I found it more difficult now as the time for receiving the call with the actual results is getting closer...I am so upset, my mind can't focus on anything.
Thank you again for your kind words. This also helps.

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Original poster
Littlehoppe · 14/02/2021 08:12

*tidied up

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Useruseruserusee · 14/02/2021 08:14

I really feel for you. My youngest has a rare abnormality (TOF/OA), but we did not find out until he was born. I can’t imagine what it would have been like to find out whilst I was pregnant.

DinosaurDiana · 14/02/2021 08:18

22 years ago I had a blood test that was high. I was devastated and told DH that I absolutely couldn’t continue with the pregnancy if there was a problem. I was so unbelievably upset, I was manic with worry.
I went for an amino.
Between the amino and getting the result I felt the first flutter of movement. I knew then that no matter what the result was, I was keeping my baby.
Stay positive and do t make any decisions yet 💐

Original poster
Littlehoppe · 14/02/2021 08:43

@Useruseruserusee
Sometimes, I wish I would not know. One of the things it terrifies the most is to know is that I will have to make the decision...
I hope you and your little one are doing well!

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Original poster
Littlehoppe · 14/02/2021 08:57

@DinosaurDiana
Thank you for sharing your story. It's a beautiful one... I hope everything worked out well for you.
I might have started to grief because inside me I know what is going to happen. I have no doubts.
I will try to follow your advice and be positive. Go for a walk, stay calm...the whole Covid situation doesn't make it any easier.

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BettyOBarley · 14/02/2021 09:14

I had to post and wish you well as we were in your position (although 1/20) 5 years ago and I remember the agony so well and you're right, the biggest gut wrench for me was how would we make that decision. But if it comes to it you will, and it will be the right decision for you. Wishing you well, I hope your results come back soon and end the awful wait for you.

LouLikesLollies · 14/02/2021 10:06

@Littlehoppe Just wanted to say how sorry I am you’re going through this. I know it’s not quite the same, but when I was waiting for my nipt results I spent the whole time looking for other people’s experiences and was reassured by how many positive outcomes there were despite the high odds from previous blood tests. Have everything crossed for you 🤞🏻

mootymoo · 14/02/2021 10:17

Can I suggest you look at some of the Down syndrome support organisations information and also blogs - there was one on the bbc ouch recently, it might help. My friends dd is at college (normal college I should add) living in halls studying animal care and vet nursing assistant to try and give you a positive story. I myself had a bad scan and it turned out 100% fine, had to wait until birth though, exh wanted to terminate but I didn't, I understand the angst.

LBB2020 · 14/02/2021 12:20

I have a child with Down syndrome. Our scans were fine, we had a postnatal diagnosis! If you have any questions and I’m able to answer I’d be happy to! It’s not all doom and gloom Wink x

Original poster
Littlehoppe · 14/02/2021 13:45

I am grateful for all your comments and suggestions. I am all ears (or all eyes in this case) and welcome every story.
I have done a huge research already ; I think I must have read or watch every single piece of information related to my situation and DS.
Initially, I was interested in finding people whose stories desafied all statistics and had happy endings (all clear results). Unfortunately, with my numbers I didn't not find many... and I had to start accepting the results. Then, I realised that some people also had a happy ending after being given a final positive result. I feel admiration. We are all in different circumstances and have our own point of views.
I know people who have DS myself, I have reached out to others I didn't know that well... and although I always had a solid view on the subject - after I was told my chances - I have reconsidered everything and am not taking my decision lightly.
There are other things I am scared of like the precise moment when I receive the call to confirm the bad news . I think I will collapse and how I am going to tell my own mum. She lives far away and her health is very fragile. I think she will not be able to cope...I guess such is life. Sometimes you are over the moon and sometimes you are in the darkest places.

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Skymum82 · 14/02/2021 14:11

Just have a massive think, and remember it’s your decision.
I’m just going to say, I have 3 children with disabilities (all 3 have autism), my eldest has moderate learning difficulties and my son moderate to severe). No scan could say whether they would have autism, and I’m pleased about that tbh, as looking after them and the different life I now live to what I thought I would, however when they got their diagnosis it wasn’t a shock to how I would cope as I had already been coping. It can be really hard work but so rewarding at the same time. My eldest didn’t say her first word till 3 and honestly at the time I worried it would never happen. She is now a massive chatter box.
I’m also pregnant with my 4th (massive surprise ad found out a week after my last child got a Autism diagnosis). So I’m guessing this one could have autism too...
I know autism and Down syndrome are different. However life soon becomes normal x

LBB2020 · 14/02/2021 14:59

I would suggest reaching out to the Down syndrome association and positive about Down syndrome (PADS).
A diagnosis of DS isn’t the end of the world, as @Skymum82 said there are many things not screened for before birth! Try to stop worrying about coping and collapsing and just get through each day at a time x

sabrixx · 13/02/2024 23:00

Littlehoppe · 13/02/2021 22:28

We went for our Dating Scan and combined screening test last week. The scan was fine with a slightly big NT of 3mm. The Sonographer did not even mention it. We were over the moon...
Unfortunately at the beginning of this week I've got a devastating phone call saying that my blood test results had put me at high risk for the three trisomies being the risk for high syndrome greater than 1:2. I had CVS on Thursday and now am waiting the results. With these odds against us I am preparing myself for the worst.Sad
I suppose the purpose of this message is to connect with people who have been in similar situations, with positive or negative outcomes so it might help me to go through this.
The pain is so intense. The waiting is unbereable. I feel I am losing my mind...

hi, i know it’s been a while but any updates? as i’m in the same situation

Original poster
Littlehoppe · 14/02/2024 09:13

@sabrixx
I am so so sorry to hear you are in the same situation. It is horrible, but it does not last forever. I still remember the feeling of waiting for the call.
I received it late on a Monday, a few days after the CVS. They confirmed the baby had Down Syndrome. I decided not to continue with the pregnancy. Had a surgical. It was hard, probably one of the hardest things I have gone through. Not the operation itself. That is ok. Fast and painless. It is the mental side the one that hurts. Probably, I am still healing. I still think about it often.
Anyways, 6 months afterwards I have got pregnant again. I now have two beautiful daughters. Life must go on and is mostly a happy one despite some sad moments.
It was the best decision for us although I fully understand anyone who makes a different choice.
I hope you receive good news soon and feel free to reach out if you want to talk x

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User69611 · 14/02/2024 11:27

Hi @sabrixx , just wanted to say thinking of you and so sorry to hear you are going through this. I had the same situation last year and unfortunately as with @Littlehoppe it was confirmed and had surgical termination also :( which is a highly personal decision and not right for everyone of course. I am now pregnant again and also had an older child to think about when making the decision. Really hope you get the outcome you wish for and find a way to cope with this awfully worrying and distressing time, take care xxxxxx

sabrixx · 14/02/2024 13:30

User69611 · 14/02/2024 11:27

Hi @sabrixx , just wanted to say thinking of you and so sorry to hear you are going through this. I had the same situation last year and unfortunately as with @Littlehoppe it was confirmed and had surgical termination also :( which is a highly personal decision and not right for everyone of course. I am now pregnant again and also had an older child to think about when making the decision. Really hope you get the outcome you wish for and find a way to cope with this awfully worrying and distressing time, take care xxxxxx

@User69611 @Littlehoppe I am sorry for what you had to go through and I hope you are well now, happy to hear about your daughters x

I had my face to face appointment today and the lady said everything with the baby during the first scan was fine apart from the NT which was 3.5mm. On my blood test I got Free beta hCG of 3.88 MoM (she said it’s very high) and PAPP-A of 0.94 MoM (normal).

What were your numbers? do you remember?

I will have my CVS next Thursday, my husband is out of the country for work so it will be just me and i’m so scared of the outcome.

User69611 · 14/02/2024 20:26

Ah @sabrixx that is promising, really hopeful for you. My NT was higher (4.7), HCG 2.0 and pappA 0.4. Can totally relate to wanting to compare and just try find out all information possible to predict what the outcome is, it’s such a worrying time. I think it probably is 50:50 which makes it harder as the toss of a coin will have such a different outcome on your life. I found the CVS a bit painful so take some painkillers before and hope you have a close friend or family member to support you emotionally whilst your partner is away. Take care xxxxxxx

Original poster
Littlehoppe · 14/02/2024 21:14

@sabrixx I also relate. I was surfing the net trying to get as much data as possible.Mine were HCG 1.6MoM and Pappa 0.18 ( very low) .They are quite different from yours.
In my case the CVS was not painful but I think I did take paracetamol. The consultants were very nice and I am sure they will make you feel comfortable.They will scan the fetus again and they might or might not find something wrong with it. So be prepared. They did not find anything wrong with mine though, which gave me some false hope.
Try to keep yourself as busy as possible while you are waiting. I found colouring adult books and exercising helped me to go through the anxity. Take care x

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