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Original poster

1 in 148 chance of downs

9 replies

Kayc93 · 17/09/2024 07:45

Hi everyone,
just wondered if someone could give me their positive stories/ experiences. Currently 14 weeks pregnant with rainbow baby. Recently had nhs screening for downs done and it's come back with 1 in 148 chance of downs. I know some people have much higher chance but I'm so worried. Hcg came back 1.89 mom Papp-a 0.71 mom and the nt was 2.2. Am currently awaiting NIPT results. I am Constantly feeling sick and having gut feelings baby has downs and thinking of the worst scenario. Did anyone else think the worst too I hate it as I'm usually spot on with gut feelings. For example last time I was pregnant I knew pregnancy would end up in miscarriage and something wasn't right.
first child was 1 in 1000 chance second considerably higher risk 1 in 250 which caused me a lot of stress.
sending love and hope to anyone in a similar situation to mine ❤️.
thanks to anyone who has took the time to read x

OP posts:
NCISveryspecialagent · 17/09/2024 08:27

Morning OP,

I'm sorry you are going through this. I remember the feeling well. I had a risk of 1 in 110 with DD. I felt totally blindsided as I hadn't really been worried about it, I was only 25 and stupidly thought it was something that happened in older pregnancies.

I also had the NIPT test & the results for that came back within about a week. It was such a long wait & you need to look after yourself and try not to drive yourself mad thinking about it - I know that's easier said than done!

We had counselling with the hospital and they spoke us through everything which I found really helpful.

Thankfully the NIPT test came back with much better odds and DD is healthy, but the worry was awful.

If I manage to have another I think I'll do the NIPT straight away to stop the worry I experienced before, or get an early indication if anything is found.

I hope you get your results soon & they are positive for you. Look after yourself Flowers

Original poster
Kayc93 · 17/09/2024 08:40

Thank you so much for taking the time to reply. It's such a horrible thing to go to and I do appreciate there are some with much higher odds. But as much as you try not to worry you still do. I think I'm so worried as I have a 5 year old with autism and would not be able to continue with the pregnancy if there is a high chance of downs so I'm literally thinking the worst xx

OP posts:
LuluBlakey1 · 17/09/2024 08:42

But try to remember that means a 147 in 148 chance of it not having DS.

Anisty · 17/09/2024 08:56

I had my final pg at 40, which came on the back of 4 mcs (early mcs)

I knew i would keep the baby, no matter what and i didn't want to chance another mc so i did not have amnio.

I worried all the way through about something being wrong. Later, i had a 4d scan and i thought my baby's face looked Downs with the eyes far apart.

I was really convinced. When DD was born and the dr comes to do that first check so you can be discharged home (and we left on the 6 hr discharge) I asked if DD was Downs.

He said she didn't look as if she was.

She isn't!!

Gut feelings really can be wrong. I do have a DS with autism and learning disability and he really is a very wonderful and most loved son.

So I would definitely have welcomed a Downs baby too - it's just wanting to know and prepare isn't it. Chances are high your baby won't have Downs but you are going to fall in love whatever.

All mine are adult now - DD is 17 yrs! It all flies by so fast. I do hope you can settle and enjoy the rest of your PG.

ab03 · 17/09/2024 09:12

I had a 1 in 207 chance this pregnancy while the last one was 1 in 7000, so I felt exactly the same. I couldn't understand why the two pregnancies only two years apart would be so different unless something was wrong. The NHS didn't offer any tests as I was technically 'low risk' so I got a private NIPT and thankfully the result from that is low chance of downs syndrome. It also came back to say that this one is a boy, so I wonder if that might be why my body is reacting a bit differently to this pregnancy. Otherwise I can't understand it!

I'm not sure if it will be helpful to you if you have already made up your mind, but I did look at some Instagram accounts of parents of downs syndrome children and it did make me feel a bit better about the chance of it happening. Compared to some of the other things that can happen during birth or develop after birth, downs syndrome is far from the worst thing that could happen to a child. I just wanted to know either way rather than, as a pp has mentioned, worrying about it right up until the baby is checked after birth. Hopefully you have a short wait for the results

Original poster
Kayc93 · 26/09/2024 08:42

Hi everyone, just wanted to thank you all for your messages. Just had the phone call to say low risk took 9 days to come back just wanted to post incase this helps someone in future xx

OP posts:
kavlarr · 11/10/2024 20:34

I had my results back as 1:149 this week and luckily I'm in Wales so can get a NIPT straight away on the NHS. I'm 43 (44 when baby's due), so I know a massive part is my age. In fact the nurse said as much to me this morning when I went in for the NIPT. Other measurements for those interested:
NT: 1.5
Papp-A: 0.70 MoM
hCGb: 1.54 Mom

So frustrating knowing that if the ration had been one point higher I would have received the 'low risk' message and not had to think about further tests! But they have to draw the line somewhere I suppose.

I read on another thread that a health professional posted she tells people that the Combined Test is really a 'test to see if someone needs more tests' rather than an actual test about baby's odds!

Original poster
Kayc93 · 12/10/2024 08:01

Hi,
sorry to hear you going going through such a stressful time. Yes I agree with you there has to be a cut off point and still would have been worrying if I was only just over the high risk cut off! Least you get offered the test for peace of mind. Your stats were similar to mine so fingers crossed everything is fine for you. Hopefully you will get results asap it was a painful wait for me. Think it took 10 days they got sent to Cardiff hospital xx

OP posts:
Original poster
Kayc93 · 12/10/2024 08:02

kavlarr · 11/10/2024 20:34

I had my results back as 1:149 this week and luckily I'm in Wales so can get a NIPT straight away on the NHS. I'm 43 (44 when baby's due), so I know a massive part is my age. In fact the nurse said as much to me this morning when I went in for the NIPT. Other measurements for those interested:
NT: 1.5
Papp-A: 0.70 MoM
hCGb: 1.54 Mom

So frustrating knowing that if the ration had been one point higher I would have received the 'low risk' message and not had to think about further tests! But they have to draw the line somewhere I suppose.

I read on another thread that a health professional posted she tells people that the Combined Test is really a 'test to see if someone needs more tests' rather than an actual test about baby's odds!

Hi,
sorry to hear you going going through such a stressful time. Yes I agree with you there has to be a cut off point and still would have been worrying if I was only just over the high risk cut off! Least you get offered the test for peace of mind. Your stats were similar to mine so fingers crossed everything is fine for you. Hopefully you will get results asap it was a painful wait for me. Think it took 10 days they got sent to Cardiff hospital xx

OP posts:
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