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Original poster

Genuinely concerned about Down Syndrome risk result! (Title edited by MNHQ)

167 replies

sweetmotherog · 08/10/2019 07:34

Mine has come back as 1 in 1000.

This seems quite high considering other factors. I know someone much older than me who's risk is 1 in 1600...

Yes I know there are women who receive a result of 1 in 150 or even 1 in 80 but those people would have other risk factors too I thought.

Why has my result come back so high I wonder?

OP posts:
5zeds · 08/10/2019 12:50

@Pandaintheporridge I thought the same thing. I also don’t think describing Down’s syndrome as unhealthy is great, but I think the OP is just struggling to express herself.

ELW85 · 08/10/2019 12:51

@sweetmotherog - I’m 34 and ours came back as 1:2059 and 1:12000 respectively.

We paid £400 for the NIPT/Harmony at our local Ultrasound Direct/Babybond and it put our minds at rest.

My midwife wasn’t that helpful and said that the NHS screening takes into account things like postcode as well as ethnicity so it’s less of a predictive science than it could be.

It sounds like you won’t rest until you get a more specific result, so go and get the NIPT done?

AiryFairyMum · 08/10/2019 12:59

Are we all 'entitled' to carry 'healthy' babies or is that just you OP?

Nobhobs · 08/10/2019 13:01

Mine was 1 in 330 and I knew I wouldn't be able to relax so paid £500 for a NIPT test privately. Everything was fine. Yours are good odds so I don't think you have much need to worry, but if it's going to play on your mind then pay for a test and find out. Good luck with your pregnancy x

Nobhobs · 08/10/2019 13:01

Also, I'm 23! So my result really freaked me out, but like i said, all was fine Smile

HerkyBaby · 08/10/2019 13:12

My test was exactly this at the fetal medicine centre . They were very reassuring and all fine . This is an excellent result in my opinion.

HerkyBaby · 08/10/2019 13:13

Forgot to mention I was 38

Original poster
sweetmotherog · 08/10/2019 13:37

I don’t really understand the intent of this? You can choose not to continue any pregnancy in the uk at your stage.

Yes I know. The intent to what I wrote was because of a pp deliberately wording 'if I will only have a genetically perfect baby' as if to say being concerned and 100% sure that I'd abort a Down Syndrome fetus would be somehow immoral of me

OP posts:
Original poster
sweetmotherog · 08/10/2019 13:40

Are we all 'entitled' to carry 'healthy' babies or is that just you OP?

Sadly not. I meant that I'm entitled to only carrying a healthy pregnancy to term (obviously providing that I know the pregnancy isn't healthy and then have the choice to terminate - You don't always find out a pregnancy isn't healthy until it's too late and they're born).

I know all too well that nobody is guaranteed a healthy baby to term, having had a late miscarriage and a few early miscarriages to boot.

OP posts:
ISmellBabies · 08/10/2019 13:47

This is one of the reasons I declined the screening. They say it's for 'peace of mind' but it does the exact opposite. All it can tell you is "maybe", whether it's 1 in 20 or 1 in 2000 it's still a maybe. If you're happy with a maybe you don't need a test at all, and if you're only happy with a yes or no then this test won't help you at all.
Op get a harmony test, you get it privately and it costs £400.

SleepingStandingUp · 08/10/2019 13:52

100% sure that I'd abort a Down Syndrome fetus would be somehow immoral of me then I wouldn't have suggested you had the full tests and made a decision quicker rather than spending weeks going round in circles worrying. And as I said, presumably you wouldn't keep a baby with a more ominous diagnosis that it's screened for in the triple trisomy tests so it isn't just about DS and I can't say "unhealthy" because not all DS babies are unhealthy / not all genetically standard babies are healthy.

Carparkticket · 08/10/2019 14:18

OP it could have been anything, the bloods, the measurement...
This is my personal advice. I had a 1:700 with my first. For other reasons (anxiety, antenatal depression etc) I worried all the way until he was in my arms.

For my second I paid for Harmony

Best money I have ever spent. And then my NHS results came much lower than with my first even though I am now almost 40 so I knew that would bring them higher

My advice is that is this is something that will worry you then you do a harmony or alike

sweetmotherog · 08/10/2019 14:19

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SleepingStandingUp · 08/10/2019 14:42

I suppose the thought of anyone or anything inconveniencing my boy really worries me new babies are an inconvenience to new siblings, that's part of their role. They aren't more or less inconvenient be ause of how many chromosomes they have.

Glad you're going for the harmony and hopefully it will put your mind at rest but it definately will not make this new baby any less annoying to your son, or ultimately be any less or more amazing for him

Ruthsoph · 08/10/2019 15:23

I paid for the Harmony test - yes it was expensive (£400) but you then know what you are dealing with
mine came back 1/10000 which is 0.001% which made me feel better - also as i am 42 i was more concerned

RubbingHimSourly · 08/10/2019 15:28

My niece's came back at one in 10.

She doesn't have down syndrome but does have Autism and is none verbal / epileptic. Just one of those things and obviously couldn't be prepared for.......I really wouldn't worry about a 1 in 1000 risk but if you are go for further testing.

Gilbert82 · 08/10/2019 16:03

My child has Down syndrome, he is most definitely not an inconvenience!
Even if your chance of having a baby with DS had come back as 1:100,000 you could still be the 1!

elprup · 08/10/2019 16:08

My midwife wasn’t that helpful and said that the NHS screening takes into account things like postcode

I can't believe they take the postcode into account - that's ridiculous! Confused

sweetmotherog · 08/10/2019 17:52

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SoyDora · 08/10/2019 17:57

Any threats to my current boy fill me with a lot of upset and anger even

This is quite an unhealthy way to think. What if your baby is born and it has a disability that wasn’t screened for? Will you be angry?

chatnicknameyousuggested · 08/10/2019 17:59

I had a 1 in 8 chance and my daughter is absolutely fine. This was based on blood tests 13 years ago.

ELW85 · 08/10/2019 18:01

@elprup - it’s crazy isn’t it? That’s what pushed us to the Harmony; we just wanted something more fact-based!

5zeds · 08/10/2019 18:14

I could never let that happen to my boy. well I hate to break it to you but your baby may have a severe disability whatever the test says. You could have that one in whatever pg. Your ds could have as yet unnoticed disability. Life isn’t predictable or controllable. I think you also need to be aware that you are likely being read by people who DO have severely disabled children or siblings.

DustyDoorframes · 08/10/2019 19:41

And you are also likely to be being read by people who have disabilities, severe or otherwise, themselves.

Pandaintheporridge · 08/10/2019 20:02

OP I really think you should stop posting as it's like you have a shovel and just want to keep digging... I will assume you are full of pregnancy hormones and not in your normal frame of mind!