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Antenatal tests

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1 in 14 chance of downs baby

14 replies

Marmalizes · 17/10/2022 17:51

I’m hoping to find some support for my daughter who has been told she has a 1 in 14 chance of having a Down syndrome baby. I will support her no matter what she decides but I don’t want to offer any advice. She’s shocked and obviously very upset and is desperate to talk things through before she makes a decision. I can’t find a helpline or a support group near her who would give unbiased advice and am hoping to find some help here

OP posts:
Iwouldlikesomecake · 17/10/2022 18:29

Hi OP, she can talk to ARC (antenatal results and choices) who are incredibly good and unbiased.

Also- 1/14 is a 7% chance of having a baby with Down’s syndrome. That’s 93% chance of not having a baby with DS. No judgement either way- just statistics mean different things to different people depending on how they are framed.

hope that helps x

Fireballxl5 · 17/10/2022 18:43

My dd found out at her 20 week scan that her baby had talipes which meant a 20% chance (1 in 5) of other disabilities including spina bifida.
This midwives and doctors were very supportive and dd was seen every two weeks for the rest of her pregnancy. Dgs was born with unilateral talipes and otherwise is absolutely fine
It’s a lot for your dd to take in of course and she should definitely get as much information as she needs to make her decision. If your dd goes ahead with her pregnancy she will be well supported by health professionals.

fyn · 17/10/2022 18:56

Has she not been offered a further NIPT/harmony blood test. It’s 99% accurate for diagnosis of Down syndrome. If not they are about £400 privately if she would like a more definitive answer.

MintJulia · 17/10/2022 19:02

I had a 1:28 risk, and had an amnio.

It was simple, painless and enabled me to know for sure. It really wasn't difficult.

Mimmi22 · 18/10/2022 13:43

I received a 1 in 5 chance for Down syndrome a couple of weeks ago and opted for a NIPT blood test which came back as low chance a week later (apparently the NIPT is extremely accurate for Down Syndrome results). Obviously, I don’t know how it’ll turn out for your daughter, but I will say that the NHS screening appears to catch a lot people who don’t have any of the three trisomies.

I second the advice to contact ARC. Even if it’s just to have someone to listen to worries, and not specifically advise, I found them a great help.

MrsR87 · 18/10/2022 13:54

The NIPT test because available
on the NHS for women with 1/50 and higher. I had a 1/35 chance with DC2 this year. I was offered the test (a more detailed blood test that looks at baby’s DNA instead of your own). This test is simply reported at low or high risk. I was told by the medical team that low in this test is very very accurate. If you get high, they more than likely have on of the syndromes.
I opted for the test and my results were low. My baby girl was born a few weeks ago with none of the syndromes.

I didn’t feel the need to talk to ARC, as the NIPT doesn’t pose risks and so was the logical step before having decisions to make. Had I needed to make difficult decisions though, they would have been where I went.

CristinaNov182 · 18/10/2022 19:25

Nhs offers the nipt for women with 1/150 risk and higher. I was offered it at 1/77.

if you get a low risk from nipt (it’s like 1 in 10000) then you don’t need to worry, it’s very accurate. If you get high risk, as they have a lower accuracy for positives and they get a higher rate of false positives, you can proceed to get an a,Nino and know for sure.

good luck to your daughter, if in uk, she should have been offered the nipt already. Contact the midwife otherwise.

CristinaNov182 · 18/10/2022 19:26

*Proceed to get an amnio

ScoobyDoobyDoowhere · 18/10/2022 19:34

As an older mum over 35 I had a test I paid for when pregnant (it was 19 years ago). My son had a 1 in 19 chance of having downs or serious abnormalities. I was offered a further test after this and it seemed ok.
He is now 18 thriving at Uni, extremely intelligent and no health abnormalities. Then 13 months later I had the same test for my daughter she was a 1 in 33 risk. She is 17, doing A levels and no medical issues.
Is their a further test your daughter can have or is this pretty conclusive? I would suggest contacting the specialists and finding out as much information as she can before she makes decisions either way. I will add I worried with both pregnancies for the entire 9 months.

Marmalizes · 18/10/2022 19:57

Thank you for your replies. They are very helpful. I think she’s had the nipt test and is awaiting results. The thing is shes been given an overload of information. None of it good. That in turn has exacerbated her normal anxious nature. I will try to encourage her to take it one step at a time. Thanks again

OP posts:
Iwouldlikesomecake · 19/10/2022 08:38

OP, ARC aren’t just there to help her make a decision - even if she’s just wanting someone to talk to as a sounding board they can help. Just being overwhelmed is a good enough reason to call. She’s not alone in this and there are people out there who understand and listen non-judgementally xx

good luck to her with whatever her results are and whatever she decides.

Marmalizes · 13/04/2023 22:05

I just wanted to let those that replied that my daughter gave birth to a healthy baby girl this week.

OP posts:
CarbsAreNotMyFriend · 13/04/2023 22:11

Wonderful news, congratulations to you all 🥰

ThirdWorld · 13/04/2023 22:36

Great news! Congratulations grandma!

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