Down syndrome high risk 1-55

[Kellylouisem]

Hello,
Has anyone else had any experience in being high risk of down syndrome and wjat there end results where please? I found out im high risk of my Baby having down syndrome 1-55 which I am in no case worried about having a child with downs bit worried about my precious baby having heart or breathing issues which comes along with it. Would love to hear other people's experiences xx

[Gilbert82]

Hi, congratulations! I didn’t have the screening test but had a postnatal diagnosis of Down syndrome. Just wanted to say my little one has no other medical conditions (heart, respiratory system and bowels are all fine) and is touch wood pretty strong and healthy! All the best for a healthy pregnancy whatever the outcome! x

[Mayjane5]

Hi I had high risk of ds was 1:60 just had the NIPT test done which was simply blood taken from my arm and got results back within a week this may be a good option if you want to find out more accurately what the chances are.

[DharmaInitiativeLady]

I had a very similar result with my eldest daughter and she was born absolutely fine.

[Liara1512]

I’m currently going through the same as you except my baby has a 1:3 chance of downs, Edwards and pataus honestly I’m terrified I’m 22 and never had any of these problems with my daughter who is now 3. Are you going to have any of the tests like amniocentesis or cvs? I’m currently booked in for an amnio on the 25th. Wishing you positive results and all the best X

[Karigan195]

Is this onbthe primary nhs screening? If so it’s a primitive system that actually means little. Get the NIPT instead if you can afford to and presume nothing until you’ve had the detailed screening. Btw they put me at 1:68 before I even had the nuchal scan etc due to nothing more than age. I’ve had the NIPT and actual risk is less than 10,000.

[Kb8219]

I was given a high chance of downs with my first baby, we chose not to have prenatal testing and he was in fact born with Down syndrome. He has a small heart defect but that has not required surgery or medication it is just monitored at the moment! He has no other health concerns! He was by far the easiest of my 2 children as a baby and even now at 4 he sometimes has a paddy but he comes out of a bad mood way quicker than his brother! He is attending mainstream nursery and we don’t see any reason at the moment why he won’t attend mainstream school! I know how daunting it is, I worried my self sick from my 12 week scan right up until his birth but as soon as he was born it really didn’t matter

[Kellylouisem]

Liara1512 I decided to do nothing about it i am so worried thst if i have the test I would be the 1% thst had a miscarriage. To myself it wouldn't matter if my baby had down syndrome but just wanted to see what other people's experiences were. I do already have a 1 year old so feel if there was learning problems my son would be already learning so thw new baby would pick things up from him if that makes sense. Xx

[Kellylouisem]

Thank you so much for all your replys it's lovely to hear other people's experiences x

[Mayjane5]

@Kellylouisem the NIPT test is non evasive just blood taken from your arm. My results changed from 1:60 to 1:500000 after I had the NIPT.

[Karigan195]

NIPT is just a blood test but you can only get it privately that I know off.

[Soph899]

Hi all, I came across this page when I had alarming quad test results a few weeks ago, My results came back at 1:55 (Moderately increased risk).

I’m 30, this is my first baby, at the time I was 14 weeks pregnant and I’m a non smoker. I’d been for several scans and they hadn’t picked up on anything previous to this test.

When my results came back in the form of an early morning phone call from my genetic councillor I was in panic mode. How has nothing showed up on the scans? Googling constantly and watching copious videos about Trisomy 13, 18 & 21 to prepare myself for a meeting with the genetic midwife layer that afternoon! Why did they was to see me so soon? What had they found that they were not telling me on the phone?

After our meeting, we opted for NIPT testing 2 weeks ago, regardless of the outcome we just wanted peace of mind for the remaining 26 weeks of our pregnancy and although we still understood that both a positive or a negative outcome still carried risks we just wanted to be able to plan better for the next half of our pregnancy.

This forum helped so much as the first thing that springs to mind is to google something in the hope that you may find something more positive! Hoping that they have made a mistake. Like many other mums on here, it was the health defects that go with these conditions that scared me the most, you always want the best for your bundle of joy!

We received our results this morning and have a ’Highly unlikely’ risk that out baby girl has Trisomy 13,18 or 21.

Even if this showed a highly likely result it wouldn't have changed anything. We were lucky to have got as far as we have come and nothing would ever change how we felt about our baby, but reading results from people who have had what seems like such a high chance, made it easier and made the time pass quicker! We wouldn't have taken the year any further with an amino or CVS but it's nice to have slightly better peace of mind for the remaining 22 weeks!

Here's to hoping if you are reading this that you can relax too when you get your results!

Beat wishes x

[LeahP1]

Hi Liara,

I recently had the same issue, im 24 and this is my first child and i was told i was 1 in 34 chances of having downs, my edwards and platoe came back really high but the downs was so low. I have never been more anxious in my whole life, I decided to have a private test done (which you can request via the hospital) called the Harmoney test, it cost just under £400, they pull the babys DNA from your blood and tell you whether or not you actually are low or high risk, the false positives to the harmony test are 1-1600 where as the screening tests i believe were under 1-5 false positives. I got my results back yesterday and i am low risk, just wanted to let you know if you have the option to be able to pay, it has no risks to your baby doing it!

I hope it all goes well for you anyway!! xx