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Antenatal tests

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1/23 chance of downs

22 replies

Doc10 · 27/03/2019 15:31

We recieved blood results from our test 1/23 chance for downs. This is our 3rd baby im 33. Ultrasound was within range. Im so scared and keep crying thinking the worst. Keep asking myself why now? Praying these blood work results come out normal but its the longest wait of my life

OP posts:
Mayjane5 · 28/03/2019 17:56

Hi @Doc10 have you been offered further tests? We had a 1:60 chance and had the NIPT test done results back in a week x

Doc10 · 28/03/2019 18:19

Yes we had it done two days ago. The wait is agonizing

OP posts:
Mayjane5 · 28/03/2019 20:04

I know it’s very hard to wait kinda puts your pregnancy on hold for a moment, so try and fill up your day with other things they will let you know as soon as they have the results, fingers crossed it’s good news x

Cherylshaw · 28/03/2019 20:08

This reply has been deleted

Message withdrawn at poster's request.

7circlemats · 28/03/2019 20:28

@Cherylshaw I don't think your comment is kind or helpful. Down Syndrome can range from relatively mild to very severe. It carries an increased risk of miscarriage and stillbirth and there are still a number of babies with Down Syndrome who die before their first birthday. A friend of mine recently lost her little girl at just 8 years old. You don't know the OPs circumstances or view on having a child with Down Syndrome. She just wants a bit more information about what is happening with her baby and shouldn't be judged for that.

OMGIwonacar · 28/03/2019 20:32

Cherylshaw with respect you've no idea what this is like or exactly what you'd do unless you've been through it.

OP how long is wait? We had two weeks nearly three years ago. It was agonising and went to so many different places mentally.

My risk was slightly lower than yours. Have you look at Arc website?

Haworthia · 28/03/2019 20:33

This thread is no place for virtue signalling, Cheryl

Cherylshaw · 28/03/2019 20:43

This reply has been deleted

Message withdrawn at poster's request.

Mayjane5 · 28/03/2019 20:54

The NIPT test is 98% accurate, it’s a blood test of the baby Dna so it’s not widely inaccurate.

Cherylshaw · 28/03/2019 20:58

This reply has been deleted

Message withdrawn at poster's request.

Langrish · 28/03/2019 21:01

“Cherylshaw

I'm not meaning to sound disrespectful but it's not the end of the world if you have a child born with downs syndrome.
I refused all test as personal it would make no difference.
These tests are wildly inaccurate”

The key word there is “personal”. Not the end of the world to you, to some people it would feel that way and you don’t know the OP’s circumstances.

The tests are not wildly inaccurate at all. We were told at least 95% accuracy in 2003 when I was nearly 40 and I understand methods and accuracy rates have improved since then.

RainbowFox · 28/03/2019 21:42

Cheryl it's different having a sibling with a disability and being a parent to a child with a disability.

My sister was born with a disability. It wasn't much of an issue for me, I grew up with it. It was the norm.

My DS has been born with the same disability. And it's devastating, heartbreaking. I'm seeing it from an entirely different perspective. I've seen the challenges my sister has faced (as I'm sure you will have with your sisters) and it's the last thing you want your own child to go through too. It's actually very common to go through a grieving process if your child is born with a disability and even when you know logically there are people worse off than you, it still does feel like the end of the world, because it's the end of the future you had originally dreamed of for your family. It doesn't mean you can't have a happy future. But it's a different future. And it's ok to be sad, scared, heartbroken about that.

Petitprince · 28/03/2019 22:35

We were quite a bit higher risk, and also for Edwards and patau as well as downs. The wait for results was agony, but it gave us time to do some research and realise that we'd keep a baby with downs. As it was, the results were negative, but I'll never forget how hard that wait was. Lots of love to you OP.

PhoenixBuchanan · 28/03/2019 22:41

I know the wait is agonising and 1:23 seems very high, but I'm sure I read somewhere reliable that the vast majority of pregnancies that do end up as positive for Downs had numbers much higher than that- usually at least 1:10. The fact that the NT was normal is a good sign.

Petitprince · 01/04/2019 11:58

How are you doing OP? Fingers crossed for you.

flyings0l0 · 01/04/2019 16:16

if Down Syndrome is the 'worst' then I would consider my options anyways. I have a child with complex needs (nothing that could be diagnosed prenatally) and I am part of a local support group for parents of children with SN. Very, very few have DS. Most have complex learning needs diagnosed postnatally or are disabled because of issues during labour. A negative NIPT test can rule out certain trisomies but is by no means a guarantee for healthy child.

Doc10 · 01/04/2019 16:51

Thank you for the support and feedback. Its nerve wracking just waiting. Last week i was able to sign in and see the test results that showed the 1/23 risk. In the interpretation they took into consideration my second cousins baby which is family but a little distant. Then i kept reading that they also put me down for having a previous history of down syndrome pregnancy, which i did not have. It made me a little frustrated bc both my toddlers are healthy and the doctor and nurse both didnt see this, i also felt a little bit of relief. I am still waiting on nipt results, hoping and praying for the best. I did reach out through arc through email as i am in the states and see they are based in uk. They are great support. Thank you to all whom reached out

OP posts:
Doc10 · 01/04/2019 18:07

Also i am aware my baby can be diagnosed with other things postnatay although im praying all is good. My oldest was born a month early when my husband was away for military training, he missed the birth and right after when he got there we were sent to the nicu bc my daughter had a benign hemangioma on her liver. I was so thankful it was something benign but i will never forget the time we spent at the nicu with the doctors doing rounds not able to tell us what they were looking at unless the tests came back. I will never forget the ones that didnt get to come home with their babies from the nicu. Yes there are some that wish for a boy or a girl, but then theres some that wish for a healthy child.

OP posts:
stucknoue · 01/04/2019 18:12

My friends dd has downs, I'm not claiming it was a walk in the park but she due to start community college (US) in the autumn, once she graduates high school soon. Downs is a spectrum like so many things, do find out more so you can begin to formulate an opinion should the result be positive

Bowchicawowow · 01/04/2019 18:17

This takes me back. We were given exactly the same statistic for DS2. I remember sitting on the stairs listening to the midwife tell me and crying. It was such a hard time for us as DP was very ill and couldn’t come to the hospital with me for the tests. DS2 was absolutely fine.

Doc10 · 02/04/2019 10:18

Thank you all for the support. Yesterday we found out the great news. 1/23 was a risk i never had before but it can be negative for downs. I want you moms to know it is wonderful to know we stand by each other at a time like this. Arc is a great resource and great comfort to know they are there for you when you need them. I know my baby can be affected by other things than downs after birth but i want to be fully prepared bc i have two other little ones at home. Having my first daughter in nicu the first days of her life was scary enough and we would need to think of them as well if there is any reason to worry. I wish i could hold every moms hand going through the same, i wish i could tell them its going to be okay. If you have faith, pray. If you are the one to keep busy, keep busy. Dont let your mind wonder, but also do look at the info about downs and the wonderful mothers that can support you at a time like this. I found this article on pinterest along with others written by this lady it brought me to tears and comfort at the same time with someone going through the same
themighty.com/2015/10/to-the-mom-sad-about-down-syndrome-diagnosis/

OP posts:
PhoenixBuchanan · 03/04/2019 00:58

Great news OP. Enjoy the rest of your pregnancy.

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