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Talk about every stage of pregnancy, from early symptoms to preparing for birth.

1:90 Chance My Child Could Have Downsydrome.

48 replies

mumsn3tx · 08/04/2024 17:52

Hi.

I had a phone call from my midwife today regarding my quad screening, I was 15 weeks 5 days when they took my blood to do the screening and I had a phone call today and they said that my chance is 1/90 and something about pepole are usually 1/150? But she said I'm 1/90 chance my midwife was throwing all these numbers at me and how now got me really worried

I've had 1 boy and 1 girl, this will be my 2nd baby girl 💗

So they said I'm 1/90 chance of baba having DS

And offerd me 2 different tests,

  1. Test were they take some of the fluid from around baby [with a high chance of a misscaridge]
  1. Another blood test,

Of course I took the offer of another bloodtest I have to go in tmorrow for them to take my blood,

I was just wondering if anyone could help me make any sense of it and if my baby is at high risk of DS or not? My other 2 kids nothing like this was mentioned..

This was Cardiff Univercity Hospital Of Wales

Basicly I'm asking is

Am I high risk being a 1:90 chance? I'm only 27 no one on my side of the family have DS or My Baby Dad's?

Thanks girls

[I've attached some scan photos]

1:90 Chance My Child Could Have Downsydrome.
1:90 Chance My Child Could Have Downsydrome.
1:90 Chance My Child Could Have Downsydrome.
OP posts:
Are your children’s vaccines up to date?
MissHavershamReturns · 08/04/2024 17:54

Op I’m so sorry you are going through this. I have family experience of a different type of upsetting results. The charity ARC - antenatal results and choices are amazing and they have a helpline

MissHavershamReturns · 08/04/2024 17:56

My family member had the amnio in the end - an invasive test with some risk of mc. She was told the risk of mc was likely to be 1/200 if I remember rightly.

TheShellBeach · 08/04/2024 17:59

1:90 means there's much more chance the baby won't have DS. Much more.

And amniocentesis doesn't have a very high rate of miscarriage.

albaalba351 · 08/04/2024 18:00

Sorry to hear that you are going through this, although it is stressful it's important to realise that 1 in 90 is still only 1.11%... meaning that you have a roughly 98.9% (99% with rounding) chance of having a healthy baby.

Mrsttcno1 · 08/04/2024 18:00

Hi OP, if your result has come back as 1 in 90 then technically yes, by the NHS guidance that is classed as high risk for the baby having DS. They class anything higher than 1 in 150 as being “high chance” so anything between 1 in 2 and 1 in 150 is “high chance”, your result does fall into that category.

What your result is telling you is that there is a 1 in 90 chance that your baby has got DS.

The next test you are having will give you a more accurate understanding though assuming it is the NIPT testing you are going to have?

It really does not matter whether anyone in your family or your baby’s dad’s family has DS, it doesn’t work like that. Only something like 1% of DS cases are hereditary, the other 99% are not.

I would try to put it out of your mind honestly until you have the next set of results back x

SanFranBear · 08/04/2024 18:05

My risk was much higher with my DD (1/28 iirc) and I chose the amniocentesis. There is a risk of miscarriage but its not 'very high' as you've been told. The result was also a definite positive or negative which was very important to me as I was further along at my 12 week scan than 3 months so had less time for any decisions.

Will your blood test give you a definitive answer this time? I hope so - it's such a worrying time but 1/90 does still give you a very low chance of DS.

mumsn3tx · 08/04/2024 18:19

MissHavershamReturns · 08/04/2024 17:54

Op I’m so sorry you are going through this. I have family experience of a different type of upsetting results. The charity ARC - antenatal results and choices are amazing and they have a helpline

Thank you so much for your reply!

OP posts:
mumsn3tx · 08/04/2024 18:20

MissHavershamReturns · 08/04/2024 17:56

My family member had the amnio in the end - an invasive test with some risk of mc. She was told the risk of mc was likely to be 1/200 if I remember rightly.

Ah okay thank you very much, unfortunately I am going to decline the amino 100%,

OP posts:
mumsn3tx · 08/04/2024 18:21

TheShellBeach · 08/04/2024 17:59

1:90 means there's much more chance the baby won't have DS. Much more.

And amniocentesis doesn't have a very high rate of miscarriage.

Okay thank you so much, I am point blank refusing the amino test,

OP posts:
TheShellBeach · 08/04/2024 18:22

mumsn3tx · 08/04/2024 18:20

Ah okay thank you very much, unfortunately I am going to decline the amino 100%,

It would give you a definitive answer.
Are you having the NIPT?

WhiteLeopard · 08/04/2024 18:22

I had the amnio too as I wanted to know one way or the other.

mumsn3tx · 08/04/2024 18:23

albaalba351 · 08/04/2024 18:00

Sorry to hear that you are going through this, although it is stressful it's important to realise that 1 in 90 is still only 1.11%... meaning that you have a roughly 98.9% (99% with rounding) chance of having a healthy baby.

Thank you very much, for your information I'm just working myself up,

OP posts:
mumsn3tx · 08/04/2024 18:27

Mrsttcno1 · 08/04/2024 18:00

Hi OP, if your result has come back as 1 in 90 then technically yes, by the NHS guidance that is classed as high risk for the baby having DS. They class anything higher than 1 in 150 as being “high chance” so anything between 1 in 2 and 1 in 150 is “high chance”, your result does fall into that category.

What your result is telling you is that there is a 1 in 90 chance that your baby has got DS.

The next test you are having will give you a more accurate understanding though assuming it is the NIPT testing you are going to have?

It really does not matter whether anyone in your family or your baby’s dad’s family has DS, it doesn’t work like that. Only something like 1% of DS cases are hereditary, the other 99% are not.

I would try to put it out of your mind honestly until you have the next set of results back x

Hello, ah right okay. The midwife did say it's usually 1/150 but.mine has come back in 1 / 90 when she said that I was really worried and it really upset me, she didn't say what the next test would be she just offerd me another blood test or the amino but I'm against the amino, so I opted to have the 2nd blood test but she said it is 98 / 99 percent accurate and she stated the amino is 100% accurate, but I'm fully against the amino I have to go to the hospital tmorrow for them to take my blood, then I have to wait 10 days for the result, thank you for your message!

OP posts:
mumsn3tx · 08/04/2024 18:29

SanFranBear · 08/04/2024 18:05

My risk was much higher with my DD (1/28 iirc) and I chose the amniocentesis. There is a risk of miscarriage but its not 'very high' as you've been told. The result was also a definite positive or negative which was very important to me as I was further along at my 12 week scan than 3 months so had less time for any decisions.

Will your blood test give you a definitive answer this time? I hope so - it's such a worrying time but 1/90 does still give you a very low chance of DS.

Awe ;(

The next blood test is 98/99% accurate that is what the midwife told me,
She also said the amino is 100 percent accurate but I really don't want to risk it so I opted to take the blood test I'm currently 17 weeks 3 days, I'm just so worried for my babaa 😭😭

OP posts:
bruffin · 08/04/2024 18:30

I was 1 in 60 and took the amnio which came back negative for DS

mumsn3tx · 08/04/2024 18:33

bruffin · 08/04/2024 18:30

I was 1 in 60 and took the amnio which came back negative for DS

I'm just to scared for the amino, I'm probably just working myself up it's so scary though

OP posts:
Marghogeth · 08/04/2024 18:35

Does it help to look at it as a 0.01% risk?

Aliceisagooddog · 08/04/2024 18:37

I had a similar situation (although 21 years ago!!). I did not want the amnio, there is no way I would abort anyway. Please go with your gut, I dislike the way some medical people assume what you should do. My daughter was fine btw, but whatever I wouldn't have risked her for anything.

nc22124 · 08/04/2024 18:39

It's still very unlikely your baby will have Downs. A midwife gave me this analogy to try and reassure me: Imagine you have 89 black cards and one red card face down and you can only turn over one card. The chance of you having a baby with Downs is the same as the chance of you turning over the red card. You could even try it if you have enough playing cards!

I thought you could get NIPT on the NHS if it's less than 1/150. I personally found the combined test stressful and not reassuring, whereas NIPT was very reassuring.

Mrsttcno1 · 08/04/2024 18:44

mumsn3tx · 08/04/2024 18:27

Hello, ah right okay. The midwife did say it's usually 1/150 but.mine has come back in 1 / 90 when she said that I was really worried and it really upset me, she didn't say what the next test would be she just offerd me another blood test or the amino but I'm against the amino, so I opted to have the 2nd blood test but she said it is 98 / 99 percent accurate and she stated the amino is 100% accurate, but I'm fully against the amino I have to go to the hospital tmorrow for them to take my blood, then I have to wait 10 days for the result, thank you for your message!

I would assume if it’s a blood test next then that will be the NIPT, that should give you a much clearer picture of what may be going on. I’ve got my fingers crossed for you x

mumsn3tx · 08/04/2024 19:09

Marghogeth · 08/04/2024 18:35

Does it help to look at it as a 0.01% risk?

Is that what there chasing me as a 0.1 or 1.1 risk?

OP posts:
Emmzo · 08/04/2024 19:10

Hey, I was in a very similar position a couple of years ago, DD’s quad test came back at 1/40 chance at around 17 weeks. I was against amino too, although if you read about it the actual chance of miscarriage is very low, and skewed because babies who do have the conditions they’re looking at are at higher chance of miscarriage at that time anyway.

I was told that if the next blood test (NIPT) was clear, it means less than 1/1000 chance and knew I would be happy at that level. If it had been positive then the chances of a chromosome issue are fairly high, so I think we would have reconsidered amino at that point.

The feral medicine midwife at my hospital was lovely and took so much time to talk through my questions. She explained it in a way that I wish all midwives would… your result is not a random 1/90 chance, it means that of 90 ladies with your exact figures from blood results, same age, weight etc, one of those would be expected to have Downs. I felt that explanation really put it into perspective for me and I felt a lot better… although the wait for results was horrible and felt endless.

DD is a very happy, healthy 18 months now, no issues at all. Fingers crossed for you xx

albaalba351 · 08/04/2024 19:21

mumsn3tx · 08/04/2024 18:23

Thank you very much, for your information I'm just working myself up,

Your feelings are so valid, I just know that stats can be so scary and sometimes it is best if they are flipped to put things into context! Fingers crossed it's all ok for you!😊I'm sure that it will be but it doesn't stop it being a bit scary until you find out.

Justhereforaibu1 · 08/04/2024 19:26

Mine came back as 1:5 and I had the amnio ( well cvs which is earlier) which was very unpleasant. DD was fine.

gardenpicsnc · 08/04/2024 19:36

Low risk is usually 1 in 150,000

1 in 150 is the cut off for a high risk result at my trust, so yes, 1 in 90 is very high risk.

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