1 in 2 chance of Downs from NT bloods

[anxietyfilledmum]

Hello,

I have never posted before and would love to hear from anyone who may have been in a similar position (good and bad).

I had my 12 week scan last week and was told that all looked great. However, the results have come back from my screening test to show that I have a 1 in 2 chance of our baby being born with DS.

I feel like it has floored me and never expected to hear that news after such a positive scan result last week.

My blood results show:
Free BhCG - 3.52mom
Papp A - 0.59mom
Nuchal Tran 3.1mm
My age 39

The hospital said that there wasn’t any markers that were particularly alarming but after talking to the Arc helpline today it’s apparent that my bloods are not great results.

We are booked for a csv on Tuesday and will hopefully hear the results by next weekend. The waiting is killing me and I'm terrified. This baby is our miracle after so long trying and I am really scared.

Has anyone had a similar prediction of 1 in 2 and it been a positive outcome. I know googling is not good but im desperate to hear that there is a chance.

Thanks for reading x

It's not all roses ... I know of two women who have DS children who say that whereas they love their children (both girls) they would have more seriously considered termination if they had known about some of the health issues and the impact on them and their health.

@YetAnotherSpartacus no one said it was roses

But then when is life ever

Harder for some than others and I thought that another perspective would paint a fuller picture given the overly rosy, but not terribly realistic, one being pained.

@YetAnotherSpartacus I don't think anyone said what life actually was like. Just pointed towards going doing some research which will give the honest truth.

The diagnosis isn't what it used to be. The average survival age used to be low and now people with DS outlive their parents. That is the truth. That's not to say that obviously there are still health issues and delays.

I'm sorry you have friends having a tough time. Life is tough but it's still full of joy.

The diagnosis isn't what it used to be. The average survival age used to be low and now people with DS outlive their parents.

That's a major worry for them too, particularly for one with limited family ...

The honest truth often isn't rosy.

I have also had a high result for downs and am waiting on further tests.

I seem to be in a minority on here as I am fairly sure I would opt to terminate the pregnancy if the baby is downs.

Someone said earlier that there are a lot of misconceptions about Downs and I agree with this but in my opinion these misconceptions are based around what we can see - actors and TV presenters and anecdotes of loving and lovely people and I have no doubt they are true but they also aren’t the whole picture.

I support any woman making the decision that is best for her; if I had a baby with downs or any other disability I’d love them just the same as I would any other child I’d have, but that doesn’t mean I wouldn’t want a different life for them - and me.

I wish you well OP, it’s a horrible time. I may try to speak to ARC today, the hospital gave me their details

Yes it is a point of concern but also shows how much things have improved for people with DS. Many people think that's still the truth.

I've had people surprised that my toddler is learning to walk, they didn't know people with DS could. People need to go find out for themselves what the diagnosis means.

No one is saying life is rosy. But I'm living it and active in the community, so fully aware of other peoples stories. It's hard but nothing to be scared of.

None of us hide it when you ask. That's why I say, do your research.

you can't control the future. No one knows what it holds

Saying I wouldn't charge a thing doesn't mean life isnt hard at times. It means it's worth it

Exactly, people need to go and find the whole picture. Find out what the truth is.

I would say the negative assumptions are far more what I find. People are amazed that George Webster is a presenter and look what he did on strictly. They didn't know it is possible. It is if people go and research it

No one can sit and say what it is or it isn't. People have to find it for themselves

But that's not a judgement from me or anyone what people's decision then is

Ours was a 1:2 chance. We prepared ourselves and DS was born without it.

I remember the sonographer telling us to look for the nasal bone in the 3D scans. We found it but still weren't convinced it was a marker or not
x

We made the decision to have further testing as we knew we would terminate if they had a chromosome disordered. Results came back negative so we continued on with the pregnancy.

The hospital wouldn't even test me when I had my child, apparently I was too young to need them.
My daughter has ds. If your baby does have it it's nothing to be scared of. I know it's devastating though to be told this.
My daughter fills my heart with so much joy every single day. I'm so proud of her. So many tears were shed when she was born and she was given that diagnosis. She has an extremely full life and doing everything that other kids her age do, other kids are so good with her (something that always terrified me was her being bullied or left out) she has lots of friends and I've experienced nothing but kindness towards her and the wee minx has everyone wrapped around her baby finger, running after her 🙈

Yes it is a point of concern but also shows how much things have improved for people with DS. Many people think that's still the truth.

I've had people surprised that my toddler is learning to walk, they didn't know people with DS could. People need to go find out for themselves what the diagnosis means.

From my own experience of strangers confronted with a child's disability, that comment "oh I didn't know people with DS could walk" sounds more like someone talking utter nonsense because they're uncomfortable with disability and have no idea how to handle it but are trying to be cool about it and act supportive.

I'm not saying things haven't improved for people with DS - obviously they have - I just highly doubt that anyone chatting to you today is from an age where they genuinely still believe people with DS can't walk. And even if they haven't met many people IRL, I doubt that someone with a TV or Internet hasn't ever seen someone with DS walking around. It just sounds like an awkward filler comment to show an interest and be friendly and supportive as opposed to what they genuinely believed.

I just think that says more about that person (not necessarily negative) and situation than it does about improved prospects for people with DS. But I'm sure there are heaps of other examples that show that things are better nowadays, so I don't dispute that at all.

Whatever decision you make will be the right one for you.

I know someone who had a child as a single mother nearly 60 years ago. The child was physically and mentally handicapped (the terms used then). The mother is still the sole carer. The child, now a woman nearing 'retirement age' and is in good general health, but the mother is elderly and increasingly frail.
The mother has never to my knowledge complained.

I also know couples who terminated a pregnancy where there was a high possibility of disability. Their decision, and the couples went on to have children.

Whatever decision you make will be the right one for you.

I was 1 in 17 I think but it was explained that my age alone would have increased it - I was 40. I had an amniocentesis on the basis that I had 2 other children (8 and 16) and what concerned me wasn't just DS but heart defects and how fair would it be on them. It was fine but did come with a 1% chance of miscarriage. My son is 12 and an absolute joy. I often think how wrong I was to have done anything that would have risked his existence and see children with Down syndrome and know I would have loved a child with DS too so I do regret the amniocentesis. I think I'd need to know what % of people with 1in 2 go on to have a baby with DS.

Just wanted to update this thread incase anyone finds it in the future. I’ve spent the last few weeks scouring every possible similar thread for positive stories. Sadly ours doesn’t have a happy ending from our cvs result. We got the news we were dreading, that our baby has T21.

Nothing can prepare you for that call and no matter how much the odds were not in our favour, you hold on to every bit of hope. Our personal decision is to not continue with the pregnancy and the guilt and pain of this decision will live with me forever but I know it’s what is right for my family and our other child’s happiness now and in their future.

The waiting for results has been without doubt the worst weeks of my life and something I’ll be processing for a long time. I’m sending love and strength to anyone now or in the future who is in a similar position. I will be enveloping myself in the love and support of my family and friends but these threads from people I’ve never met have also been a source of comfort to me in the lost hours of the night when I’ve found myself scrolling for hours in hope of a situation or odds the same as mine.

Next week we start the process of saying goodbye to our baby and as much as I'm
terrified, this is the last thing I can do to honour our baby and I hope they feel how loved and wanted they were.

I’m sending love to everyone going through such heartache x

@anxietyfilledmum1 I'm so sorry to hear. I feel heartbroken for you. I wish you all the strength and praying you will move on from this quickly. Thank you for sharing your story. Lots of love xxx

@anxietyfilledmum , thanks for the update. You've made a big decision but you've not made it lightly Hugs.

@Copasetic surely it’s 50%? Isn’t that what 1 in 2 means

Thanks Carol Vorderman for your helpful reply

@Diynoidea , Copasetic had a 1 in 17 chance, and that is not 1 in 2. Your post seems tone deaf.

Yes I flinched inside when I read that.

@anxietyfilledmum1 I'm so sorry.

Am so sorry x

So sorry to hear your news OP. Have been here. Be kind to yourselves. ARC are a great source of support, not just now, but in the months ahead. It's difficult to know how you may feel in the years ahead but many people have both a profound sense of loss but also a profound sense of peace. Xx

I'm so sorry 😞

I grew up with a sister who had a similar condition and, whilst she and our family made the best of things, her life was hard and the accusative effects on the whole family were catastrophic.

I know there are many stories of children with disabilities living fulfilled lives, that is not the case for everyone.

My sister was very ill and died in early adulthood.

I miss her terribly, but I don't miss the suffering she endured.

Take care