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Pregnancy

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

Original poster

1 in 16 chance of downs syndrome

225 replies

Mummyo1 · 13/09/2023 18:35

I've spent hours crying. I've had the call to say my scan was normal, babies fluid on the neck came back as normal but my blood tests showed high hcg and low papp a. I'm low risk for Edwards and patau syndrome but high for downs syndrome 1 in 16. I've got a nipt tomorrow. Anyone else similar and be okay? I'm heartbroken 💔

1 in 16 chance of downs syndrome
OP posts:
AnIndianWoman · 14/09/2023 16:13

Tryingtohelp12 · 14/09/2023 11:32

Sorry but your language (and the language of many posters) is offensive to people with Down’s syndrome. Down’s syndrome (like many other learning disabilities and autism) is a spectrum. Many people with Down’s syndrome live ordinary full lives with partners, eduction and employment.

this is your child and you will love and support them and their needs.

This isn’t true at all. Yes some DS people can live independantly after a lot of (expensive) health interventions most of which aren’t available on the NHS but most will not and very, very few will have ‘ordinary and full lives’ in the way you described. OP has every right to want to go into this with her eyes wide open, and every right to be disappointed.

Goldencup · 14/09/2023 16:23

AnIndianWoman · 14/09/2023 16:13

This isn’t true at all. Yes some DS people can live independantly after a lot of (expensive) health interventions most of which aren’t available on the NHS but most will not and very, very few will have ‘ordinary and full lives’ in the way you described. OP has every right to want to go into this with her eyes wide open, and every right to be disappointed.

Show quote history

I am really interested to know what interventions you don't think are available on the NHS.

Personally I wouldn't terminate for Down's. There are so many more difficult conditions that can't be screened for including Autism.

Original poster
Mummyo1 · 14/09/2023 16:24

@Blixem thank you for your support, 1 in 50,000! Wow! What a turn around! I'm praying I get the same as I'm struggling with this a lot. I've cried ever since and my partner has shut down. I think it's because like you, we decided If baby has then we won't be continuing the pregnancy and that breaks my heart it really does. They've put me on 150mg of aspirin daily for the papp a, just hoping my nipt results come back low

OP posts:
Original poster
Mummyo1 · 14/09/2023 16:25

@Goldencup it's great you wouldn't, but don't shame people on here. You have no right. This isn't a post for debate but for support. So either offer support and advice or please don't comment.

OP posts:
squareyedannie · 14/09/2023 16:26

AnIndianWoman · 14/09/2023 16:13

This isn’t true at all. Yes some DS people can live independantly after a lot of (expensive) health interventions most of which aren’t available on the NHS but most will not and very, very few will have ‘ordinary and full lives’ in the way you described. OP has every right to want to go into this with her eyes wide open, and every right to be disappointed.

Show quote history

Just like every other baby you have then?
You never know the health interventions any of us might need.

Goldencup · 14/09/2023 16:33

Mummyo1 · 14/09/2023 16:25

@Goldencup it's great you wouldn't, but don't shame people on here. You have no right. This isn't a post for debate but for support. So either offer support and advice or please don't comment.

I'm not shaming anyone, of course anyone can terminate a pregnancy for any reason. I just don't understand why Down's Syndrome considered such a calamity ? I think it's just that it can be tested for whereas there are plenty of other things that can happen which cannot be predicted or prevented. By it's nature having a baby is one of the riskiest things you can do in this life.

Immasucker · 14/09/2023 16:38

Is Down Syndrome really so terrible? I know lots of kids with it and they are children like any 'normal' children. They still eat, love, tantrum, potty train, read stories. Maybe read up on it so you are better informed. It is not the disaster you think it is.

sedgyhdc · 14/09/2023 16:39

I just don't understand why Down's Syndrome considered such a calamity?

Someone in my family had a baby with Down's syndrome last year (undetected) and they've spent more time in hospital than out of it due to various related health issues, the mum has had to give up work, it's pretty dismissive to not understand the strain that would put on a family and why if given a choice, they may not have chosen it. I have no idea what they would have done if they'd have known, but I know I wouldn't.

Goldencup · 14/09/2023 16:46

sedgyhdc · 14/09/2023 16:39

I just don't understand why Down's Syndrome considered such a calamity?

Someone in my family had a baby with Down's syndrome last year (undetected) and they've spent more time in hospital than out of it due to various related health issues, the mum has had to give up work, it's pretty dismissive to not understand the strain that would put on a family and why if given a choice, they may not have chosen it. I have no idea what they would have done if they'd have known, but I know I wouldn't.

Believe me I know plenty about Down's Syndrome and TBH the same could happen if your baby arrived at 24 weeks, had a birth injury, had non verbal autism or spinal muscular atrophy or even very brittle asthma. All of those things might mean someone can't work as much as they had planned and spend a significant amount of time in hospital. There are no guarantees and TBH at least with Down's it's something of a known quantity.

supersonicginandtonic · 14/09/2023 16:48

Why are people so judgemental? Any child with a disability can have a huge impact on a family and will face challenges when they are growing up.
My youngest brother has Down syndrome, it wasn't detected during my mums pregnancy. He's independent, lives alone and works but my parents have been extremely lucky.
When I had my children I had all the tests, I don't know what my decision would have been if it was positive as I would have had to consider the impact on my other children and my life.
The decision wether to terminate is not an easy one and should be down to the expectant mother and not outsiders and if they do go ahead with a termination they should not be judged. It's a traumatic experience and they deserve support and compassion, nothing else.

sedgyhdc · 14/09/2023 16:52

@Goldencup sure, and if there was a test to show if those things would happen I would take that test too. But it's irrelevant, and frankly there is no point debating the law or the policy, we are not talking macro politics here, we are discussing a pregnant woman who is very understandably worried about something that is statistically higher than usual, something that has a spectrum of possibilities she won't know the reality of for some time, and, whether you agree or not, is in the position to choose how to proceed should the tests show Down's syndrome. An awful, difficult decision, but one the OP has a right to make.

Goldencup · 14/09/2023 16:52

Why are people so judgemental? Any child with a disability can have a huge impact on a family and will face challenges when they are growing up.

This exactly my point a normal NIPT doesn't guarantee a child without a disability, there is no test on earth that can do that. So why single out DS which is usually described as mild to moderate.

genesis92 · 14/09/2023 16:53

If the fluid at the back of the neck is normal, its a very good sign

Goldencup · 14/09/2023 16:55

sedgyhdc · 14/09/2023 16:52

@Goldencup sure, and if there was a test to show if those things would happen I would take that test too. But it's irrelevant, and frankly there is no point debating the law or the policy, we are not talking macro politics here, we are discussing a pregnant woman who is very understandably worried about something that is statistically higher than usual, something that has a spectrum of possibilities she won't know the reality of for some time, and, whether you agree or not, is in the position to choose how to proceed should the tests show Down's syndrome. An awful, difficult decision, but one the OP has a right to make.

Of course she has the right to do as she likes, I would never presume to tell somebody what to do with their own body.

sedgyhdc · 14/09/2023 16:56

So why single out DS which is usually described as mild to moderate.

If you want to debate the ethical and medical reasons for why there is a test for DS I suggest you do it on AIBU, see how brave you are there, and not on the thread of a pregnant woman facing this potential reality, who is clearly worried and likely not wanting to discuss politics, but get support.

Goldencup · 14/09/2023 16:59

I am bowing out now. I just think OP should make an informed decision, this is clearly a very much wanted pregnancy. Good luck OP no matter what you decide.

Ap24 · 14/09/2023 17:18

We've recently been through similar. NIPT has come back as low risk. Hopefully you'll get the outcome you want OP, the waiting is horrendous.

We personally would have terminated if our baby had down syndrome. Its a personal decision and only you will know what is right for your family.

Hunkydory99 · 14/09/2023 17:18

We had exactly this 2.5 years ago. We paid for a private NIPT which came back with a 1 in 10,000 risk. Had additional scans too and had to take aspirin for my low Papp-a. Baby born at 38 weeks, 8lb 10. Only health issue is CMPA and wheat intolerance! Sending you love, it’s a stressful time. We were offered counselling with a specialist midwife whilst we decided on amnio etc which was brilliant.

Whatswhatwhichiswhich · 14/09/2023 17:18

I have no experience of this @Mummyo1 but I’m wishing you all the luck and a happy, healthy baby Flowers

sunshinesupermum · 14/09/2023 17:20

When I had DD2 (I was 36) the only way if knowing if she had DS was through amniocentesis. I was told that the risk of miscarriage was higher if I went for the amnio and we decided not to find out. She was born without DS. We have plenty of other neuro diverse members in our extended family. They are cherished as much as our non neuro diverse ones. I'm sorry you will be 'broken hearted' if you get bad news OP but please focus on the likelihood all will be well.

ThePowerOfThree3 · 14/09/2023 17:30

Just wanted to offer a handhold as I’ve been in the exact same boat with my pregnancies. Low pap A and 1/4 Down syndrome results. I had the amnio and babies were healthy, at term deliveries and didn’t have Down syndrome. I hope your results come back soon x

BreatheAndFocus · 14/09/2023 17:31

The neck looking normal is positive news, OP. I had a very high risk (due to age - in my 40s). I refused all tests but the sonography did tell me that baby’s neck looked normal. Obviously, it was still in my mind - along with the tens of other things I was worried about - but she was right, and my baby doesn’t have Downs Syndrome.

The odds are in your favour and the good neck result is a positive too. Focus on those things x

IcakethereforeIam · 14/09/2023 18:02

Mine was 1 in 9 but I was 40, I don't know if that would have shortened the way they calculate the odds. I had an amnio and it was clear. I didn't have a nuchal fold scan, I think they were only just coming in and had to be paid for privately. As it wouldn't have given a definitive result we decided to wait for the amnio. I'm not certain but if it had gone the other way I probably would have had an abortion. As it happened I didn't have to make that decision.

All the best to you OP and to any other women who find themselves in this situation.

Katylouise88 · 14/09/2023 18:13

We had a 1 in 10 chance, declined any further testing, baby was born without Down’s syndrome

momonpurpose · 14/09/2023 18:26

Tryingtohelp12 · 14/09/2023 11:32

Sorry but your language (and the language of many posters) is offensive to people with Down’s syndrome. Down’s syndrome (like many other learning disabilities and autism) is a spectrum. Many people with Down’s syndrome live ordinary full lives with partners, eduction and employment.

this is your child and you will love and support them and their needs.

Op has every right to feel the way she does. She needs support. This is not a post about you and your choices. Give her the grace we would all give you