High risk

[JulieC1981]

I have been told I'm in a high risk for down syndrome.

I have to go back on Thursday for the next blood test.

I'm 38 years old and nearly 18 weeks. So nervous and scared about the results and next steps!

I was a 1 in 7, which to me sounds pretty high risk

Hi Julie. I am sorry you are going through this.

What blood test are you having this week? Have you discussed amnio? If termination is likely to be a consideration for you the certainty of amino may be helpful.of

I had a termination a year ago as my baby had Downs and multiple abnormalities. Hoping you get a good result. The odds are still massively in your favour.

I'm so sorry to hear you had to go through that and hope your are managing to cope ok with it all now x

Thank you for the reply. It was a but of a haze to be honest, she just said you can have a more accurate bloody test down and if that is high I will be offered the amnio.

My Husband said that they wouldn't be able to tell us for certain if the baby has it or not. But the NHS said the amnio would be able to tell us for certain.

1 in 7 just sounds so scary.

He is a Christian and wouldn't entertain the idea of an abortion.

Hi there

So sorry you’re going through this. I am 15 wks and found out I was high risk at 12 wks. It sounds as though the blood test is a NIPT - still screening but much more accurate. I had a 1 in 3 risk through NHS combined screening and my NIPT results came back low risk. Please don’t lose hope, as the PP said - odds are still greatly in your favour. I am due to have an amnio next week as my risk was caused by an increased NT measurement and there might be rarer conditions to consider. It is such a worrying time - sending you love and strength x

I’m also high risk at 1:50 from the nhs combined screening. I am 38 too.
NT results were fine.
I’m hesitant to have an amnio and can’t really afford the NIPT (though I’m not ruling it out).
It’s such a stress.
Fingers crossed for you.

Thank you Jim and Ethel, I'm trying not to jump two steps ahead. I remember now that it she did say an NIPT test.
You know that there are risks, especially as you get older but until someone says it's a possibility only then does it hit home. You start to think could I cope.
Ethel, why won't they give you the NIPT test?

It’s not available on the nhs here. We can have it but have to pay and it’s £475 and the local place.

NIPT is very reliable for Downs, OP.

Although termination was the right decision for us, I have no doubt that if your baby does have Downs, it won't diminish how much joy they bring, and how much you love and cherish him or her.

Best of luck for the next stages.

Sylvanian do you mind me asking what your risk level came back as? I completely understand if you do not wish to reply and thank you for taken the time to write to me.

Ethel, I so sorry you are in an area that doesn't offer the test. I only realised today that Wales is the only area that provides it. I'm not sure I would have the amnio at the risk factor you were given, but I appreciate any any risk level it will be stressful and a hard decision x

Sorry Julie, in my case they didn't do the combined test bloods. The reasoning being that the NT was so high there was no point, I was certain to be high risk. If I can help with anything else, just say. Btw the ARC-UK helpline is very good.

Hi,1:7 is actually only a 14% chance of having a baby with Down syndrome
I had a postnatal diagnosis of DS following the birth of my little one. If you have any questions that I may be able to help with please feel free to send me a message. Also please don’t be scared, there’s lots of support out there these days x

Sylvanian - thank you. I've spoken to ARC this morning and they were so lovely. They have spoken to me about the different tests and let me feel able to be opne and honest which really helped. So thank you

Gilbert - thank you for your reply. I'm trying to remain positive regardless of the result. The 1:7 shocked me as everyone else comments were I'm 1:50 etc which made my results seem all the more scary. 14% doesn't seem high but I'm stuck on 1:7 which sounds worse.
I hope your little one is going well :-) my Husband has been looking into support to give us and idea of what's out there to help us prepare if needed x

I was high risk with DS, we were told 1:11. In the end we decided not to have the NIPT or the amino. We'd had two previous miscarriages so amino was an absolute no go because of the risk. We decided against NIPT because for us it wasn't going to change the outcome and DH kept telling me how small the risks were. I mostly managed to ignore it and DS is absolutely fine, but we would have still loved him just the same if the outcome had been different.

My risk for downs was 1:3. I went for an amnio and got results that chromosomes are normal. For me it was an easy decision to go for amnio because I wanted to be sure. They couldn't get a result from NT scan so mine was based on blood test.

He is thank you, he has no medical conditions associated with DS which is probably why nothing flagged up on our scans (we declined the combined screening for DS but if any soft markers had been present on our scans we would have been informed). He is behind his peers developmentally but is doing great and getting there at his own pace. The Down Syndrome Association and Positive About Down Syndrome are great sources of up to date information. Also there’s a lovey Facebook page called Don’t Be Sorry that I follow. Please do send me a message if there’s anything you’d like to ask and if I can answer I will obviously all children with DS are different so my experience will be different to another parents (just the same as parents of children who don’t have DS!) x

Hi I have a child with Down’s Syndrome who we absolutely adore and couldn’t imagine life without.
However I clearly remember the shock, confusion and sadness of receiving a high risk result.
In terms of your risk ratio, I really wouldn’t put too much onus on it. My pregnancy with my son who has Down Syndrome had a 1 in 33 risk. My pregnancy with his younger sister had a 1 in 2 risk and she doesn’t have Down Syndrome.
1in 7 does not mean your baby definitely has Down’s Syndrome. It is a very rough guess like shaking a bag of 7 balls and seeing if the only ball marked with a star falls out.
The only diagnostic test is an amino.
Scans may show soft markers of Ds but can’t give you certainty.
My thoughts and prayers are with you at this worrying time.
The Down Syndrome Association is a good place to find relevant information should you wish to research anything.
Please feel free to pm if I can help in anyway.

Thank you all.

I had the NIPT test today, which is thankfully free in Wales and get the results next Thursday.

It's reassuring to hear that the numbers aren't everything and I need to stop focusing so much on this.

I'm not sure how to DM people on here, I click on the name but nothing happens and the three boxes next to it just say report or block.

The decision feels very much out of my hands and my husband is set against abortion. I did know this when I married him, but it does put pressure on me to be ok with it if it does not come high again. Not saying that I would have an abortion but knowing it is off the table does make it hard for me.

My risk was 1 in 33. Im 32, NT was within normal range but my bloods weren’t quite right. Nothing will make you feel better. The sheer stress & worry is horrific. I paid privately for the NIPT £400. As its not offered via NHS in my area. This came back low risk. It’s so accurate, I’m more then happy.
I wouldn’t have terminated if it was positive for DS though ... but the not knowing is horrible.
It’s so hard to remain positive. I felt like I’d lived in hell for a fortnight waiting for it all ...
I’m wishing you all the luck! Xx

Hello Johnson, that is how I feel. I'm feel like I'm walking around in a fog and I'm struggling to sleep. This week is going to feel like one of the longest of my life.

My Husband said to me yesterday we still have to get on with things, I'm trying not to feel down and keep a smile on my face but its exhausting.

It's all I can think about.

I have to try and remain positive but as we all know, that is easier said than done sometimes.

I appreciate everyone's comments xx

Hope your test results come through quickly and you get the results you’re hoping for.
I know it’s easier said than done but try not to worry, a diagnosis of DS isn’t the end of the world (there are many things not screened for during pregnancy that can be more serious than DS) x

I also have a child with DS. He is the light of my life. Please message if you have any questions.

Thank you Gilbert and hope. Trying to keep busy and not over think it. Someone said congratulations on my pregnancy the other day and I've realised I feel a little detached from it :-( not sure if that's to protect myself or something more worrying x

JulieC1981 how are you doing?
I'm in exactly the same position. I was given 1:6 chance of ds. I had my NIPT test on Tuesday. The wait for the results is agonising. Like you we will be carrying on with the pregnancy no matter what.

I had a 1:5 risk in my first pregnancy. We paid for the NIPTY test which came back 1:10,000 so low risk. Dd was born with no health issues.

The NIPTY test isn't diagnostic but it is highly accurate for downs.

Blizy, thank you for the message and I hope your result comes back showing your little one is all clear.
I'm a bit numb now, each day feels very long. I haven't told many people, just close family and a friend so everyone is still talking about baby things with me and I'm trying to smile.
Made for this - I'm praying for the same result but thinking that someone has to be the one and thinking it's me x