Active discussions

Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

Talk
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:
Original poster
Mummyo1 · 13/09/2023 20:39

@Spinningcats sorry?

OP posts:
JamieandRoybromance · 13/09/2023 20:40

I was told we had a 1 in 15 chance of Down Syndrome with my DD. It was purely down to the bloods, the scan hadn't flagged any problems at all. We didn't have any testing, just focused on the odds still being very small and had our fingers crossed for good news at our 20 week scan. There were no obvious markers at that scan thankfully and my Dd was perfect when born.

Please try not to worry until you have your results. The odds of your baby being fine are still very much in your favour. Best of luck.

Original poster
Mummyo1 · 13/09/2023 20:48

It's the hospital that called me and I've got to go there tomorrow. I'm hoping the results don't take too long. I've seen some people with a 1 in 5 chance and they've been cleared (low risk) with nipt so hoping mines the same case

OP posts:
HowcanIhelp123 · 13/09/2023 20:49

Sorry you're going through this, remember its a 15 in 16 chance that baby doesn't have Down's Syndrome. The NIPT is much more accurate and I hope it reveals low risk. We are very lucky now to have tests like the NIPT which don't carry a risk to baby.

Original poster
Mummyo1 · 13/09/2023 20:50

@JamieandRoybromance thank you so much that's so reassuring to hear I've decided to take the nipt as I'm so distressed, I've seen people say it's only my bloods are flagged and not necessarily the baby it could be nothing and that's what I'm going to focus on. I have such a good chance that everything is okay and I'm praying that it is, I'll update on here when I get results so hopefully anyone else in similar situation can read through too

OP posts:
Original poster
Mummyo1 · 13/09/2023 20:53

@HowcanIhelp123 huh? So 15 of the babies out of 16 do? Thats not what the lady on the phone said. She said 6.25% chance baby does and 93.75% chance baby doesn't

OP posts:
midnightblue12 · 13/09/2023 20:57

Ahhh what a beautiful scan photo ❤️
Keep reading that percentage.... 6.25%. I know it's hard to not let your mind spiral, I would be absolutely the same.
Do you know do you will get any answers tomorrow OP?
Sending you lots of love 🩵

Rusticanella · 13/09/2023 20:57

@Spinningcats really? Maybe read the room a little.

@Mummyo1 everything crossed for you x

Original poster
Mummyo1 · 13/09/2023 20:58

@midnightblue12 I have the nipt tomorrow, results can take a week or two! I'm just remembering, 94.75% chance everything is OK!

OP posts:
HowcanIhelp123 · 13/09/2023 21:00

Mummyo1 · 13/09/2023 20:53

@HowcanIhelp123 huh? So 15 of the babies out of 16 do? Thats not what the lady on the phone said. She said 6.25% chance baby does and 93.75% chance baby doesn't

I said that 1 in 16 DO have DS means 15 out of 16 WON'T. It's still much more likely than not that your baby does not have any chromosomal abnormalities.

lemonsaretheonlyfruit · 13/09/2023 21:01

Mine was 1 in 2 ... I had an amnio the same day and got the results a week later. That was an agonising wait. My ex H had just walked out on me 6 weeks earlier so it was an awful time. Anyway all was fine and nothing to worry about.

floofbag · 13/09/2023 21:06

What was the nuchal fold measurement ?

viktoria · 13/09/2023 21:11

Mine was 1 in 32.
My daughter did not have Down syndrome. My friend who was due the same day had a 1 in 3500 chance and her daughter has Down syndrome.

All the best for tomorrow and for the days after waiting for the result. Try and do something nice to take your mind of things.

I can't remember which time frame I was given, but I received a phone call with the test results quite a few days earlier than I expected.

And finally, I'm not sure what your thoughts are if your baby has downs. I didn't know if I would have had a termination.
This might be a bit dark, but around the time I was given the 1 in 32 chance, my friend's teenage son committed suicide.

Having a baby is a leap of faith. There are so many things that can go wrong. I think I would much rather have a child with Downs than a child who commits suicide, not that that is obviously a choice.
Downs is one of the few things that can be tested for. Doesn't mean that it's the worst that can happen. Sorry that sounds really negative - it isn't meant to be.
In any case, I wish you all the very best Stay positive

hellohelp · 13/09/2023 21:13

Wishing you all the best for tomorrow op. I'm sorry, this just isn't what you ever want to be dealing with in pregnancy 😢 sorry it is happening to your family xxx

Vandhana1986 · 13/09/2023 21:14

This reply has been deleted

This has been deleted by MNHQ for breaking our Talk Guidelines.

Original poster
Mummyo1 · 13/09/2023 21:14

@floofbag they didn't give me measurements they just said it was normal, it's just my bloods that have flagged

OP posts:
floofbag · 13/09/2023 21:29

It should be on your printout ( although I haven't had a baby for 12 years ) . They used to give you the measurements of all the limbs etc and the nuchal fold measurement . It's relevant if it's near to the boundary of normal

Original poster
Mummyo1 · 13/09/2023 21:31

@floofbag it's all online now and it's not on there

OP posts:
hellohelp · 13/09/2023 21:35

Really don't know anything about nipt testing so read NHS inform. Can someone confirm I've understood testing process properly?

So the process is

  1. Mum's are bloods checked
  2. If something flags you're offered a nipt.
Two results determine what happens next. It can either be a low-chance result so you're offered no further testing or a if it's a high-chance result then...
  1. You're offered diagnostic testing which can tell you for definite

It says that sometimes you can get a low-chance result but baby still has one of the 3 conditions (false negative)

So by only doing the nipt you could potentially then go on the rest of the pregnancy thinking all is ok until you give birth?
If I understood that right then just wondering why they don't skip nipt and just go straight for diagnostic test? Is it because it can it harm the baby or is it to do with how much it costs?

Ap812 · 13/09/2023 22:04

I had a 1 in 19 chance earlier this year due to my bloods (high hcg and low papp a) with average fluid behind the neck. My nipt came back clear and my daughter was fine. Hope it comes back clear for you. I can empathise with how worried you are, we felt exactly the same

Mangoandbroccoli · 13/09/2023 22:13

Someone has already mentioned the ARC charity and I highly recommend giving them a call in the morning - they'll help answer any question that you have in a really empathetic and non-judgemental way. I phoned them several times when in the same position and will forever be grateful for their help and support. I'm sorry that you're going through this x

Bluestoat · 13/09/2023 23:03

i had 1 in 18 with my last daughter. Everything ok with scan. Results based on age and blood test. Took about 6 days nipt results- low risk. She didn’t have downs. They called with my results. Hope it all goes well for you.

Original poster
Mummyo1 · 14/09/2023 05:28

Seeing so many positives makes me feel a bit more positive. I never expected to go through this, the wait is going to be hell its all that's on my mind, just reminding myself I've beaten worse odds (early pregnancy and miscarriage rates)

OP posts:
Original poster
Mummyo1 · 14/09/2023 07:39

Do they take your bmi into consideration when calculating a risk? I've heard over and over how my bmi is high which I'm aware of, I'm wondering if this is a contributing factor? Nipt is today at 12:30 I'm going to be asking lots of questions

OP posts:
Vallmo47 · 14/09/2023 07:44

Just wishing you well for your appointment today OP. Chances are in your favour that your baby is fine. I was raised with a disabled brother so I understand the concern - you just want your baby to be healthy and have a normal life at the end of the day. Please come back and update us later.