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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:
Gilbert82 · 09/10/2019 07:49

It takes a lot more than that to offend me Wink and my post wasn’t directed at anyone in particular. I just feel that people make judgements regarding Down syndrome without properly finding out about it.
Saying that I am very much pro choice and wouldn’t judge anyone for terminating any pregnancy if it wasn’t right for them.

kittlesticks · 09/10/2019 08:06

Isn't there a sub section for ante natal tests?
As others have said, you have a low risk.
I think this thread is in places pretty nasty.

SleepingStandingUp · 09/10/2019 08:14

Everyone has the right to decide if continuing a pregnancy is the right thing for them and their family but the language used in this post is just very sad and upsetting. My childs life is worth living, it’s happy, full of love and fun and my family wouldn’t change anything about him
This, a thousand times. My DS doesn't have T21 but his genetic condition is on the list of one's you're strongly counselled to abort. I accept that many people would do that. It makes me sad but its their lives and their bodies and I don't have a right to tell them what to do. But using words like hindrance, a threat etc if just offensive.

If OP really doesn't want anything to impact on her PFB's life, she shouldn't be having a second child because they DO pact in each others lives and there will be times when their lives WOULD be easier as an only child. And God forbid but actually the child you might end up as a hindrance and an impingement on the freedom of the other might be the PFB. That's life. If you dint want that risk, don't get pregnant at all

TheCatInAHat · 09/10/2019 08:33

My DS was low risk for all trisomies (I had the harmony test and declined nhs testing) but has had two hospital admission and several days in hospital for issues we couldn’t have anticipated. Even had we not had the hospital admissions my older DD would still have been significantly ‘inconvenienced’ but you accept that this will happen when you ttc a second.

Bellasblankexpression · 09/10/2019 09:27

@okpedro i've had a termination too. For medical reasons, as well. So my offence is nothing to do with OP's choices, I'm very pro-choice. My offence was taken in the phrasing she used, very dismissive, very throw-away, 'nip it in the bud' for example and the way she talks aggressively about 'threats' to her existing child. Does she think he's going to go through life untouched by any inconvenience? Sounds like it.
It's absolutely OP's right to terminate if she found out her baby has downs. But she's been given a low risk result, told that a consultant absolutely will not see her to discuss this and that her best port of call is the screening midwife, or taking the Harmony test. How is that not supportive and helpful?

Bellasblankexpression · 09/10/2019 09:29

Just wanted to say as well, that someone upthread mentioned the cut off risk being 1:500 - in my region it's 1:150 so maybe it varies but either way OP, you have a clear low risk result.

Passthecherrycoke · 09/10/2019 09:39

1:150 here too. I doubt 1:500 could be considered high risk anywhere tbh. My screening midwife told me she phones approx 2 families a week to tell them they have a high risk result but generally only 1 a month has a positive result on further testing.
If you contacted everyone 1:500 you’d always be at it

VulcanRay · 09/10/2019 09:41

I’m one of the PPs with a brother who has downs.

To clarify I have no issue at all with OPs views on termination, I believe passionately in a woman’s right to choose, no ifs no buts.

It doesn’t give her the right to use grossly dehumanising and hurtful language though.

mistermagpie · 09/10/2019 10:25

This thread is quite unpleasant in places OP. I understand your worries, but really, using the language you are using is quite offensive.

In my area you don't get a 'score', you just get told low or high risk. I think this is better and leaves much less scope for anxiety or comparisons with others.

FWIW I do get what you mean about the impact on existing children, although you are expressing it horribly. I'm pregnant with my third and opted for the harmony this time because the priority for me is my existing children and I would want to be prepared as much as I can for anything that might have any kind of negative impact on them. The thing is though, these tests only test for certain things and the sad fact is that there are many many conditions which could have a more serious outcome for your family than Down's syndrome. There are also many things that could render existing children disabled - you simply can't rule everything out that might happen.

I have no issue with abortion for any reason, but aborting a disabled child absolutely will not protect your existing one from 'inconvenience' or 'threats'.

sweetmotherog · 09/10/2019 10:53

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5zeds · 09/10/2019 11:01

@sweetmotherog she means it wouldn’t protect your existing child from other threats and inconvenience. How is your pfb?

Original poster
sweetmotherog · 09/10/2019 11:02

Oh and I don't believe for a second that the majority of people wouldn't change a thing about their child with DS. If I had a child born like that, I would of course change it in a heartbeat if I could! Why on earth wouldn't you? It makes life so much more difficult for them as well as everybody involved. It really does, knowing two people with a child with that exact disability, one of which being a close family member

I speak from experience too. DC1 has suspected autism, he's still a toddler. If he does have it, yes I would change it, of course I would. It isn't some fantasy gift that lots of people try and paint it as. It can be debilitating and so challenging for those with the condition. Why wouldn't I change that for him if I could?

OP posts:
Gilbert82 · 09/10/2019 11:09

No, it wouldn’t!
How do you know that your seemingly perfect healthy child won’t develop a disability or become seriously ill in the future? My friends baby was diagnosed with cystic fibrosis following the newborn heel prick blood test. It’s a life limiting illness, they are in and out of hospital constantly. If you are seriously that concerned about inconvenience and burden I’m not sure having another child is the right thing for you and your family full stop

5zeds · 09/10/2019 11:11

I think if your ds is disabled (as in has ASD) then you are going to have to learn how to express yourself less abrasively. I’m fairly thick skinned and I’m well aware that most people imagine having a child like mine is something to be avoided and for them to pity me for (notDS) but even I am finding it hard to overlook some of your statements. Be kind OP, it costs nothing.

Gilbert82 · 09/10/2019 11:16

And just for the record, I honestly wouldn’t change anything about my child. I love the very bones of him and DS is part of what makes him who he is. Yes some things may be more difficult but even if he didn’t have DS he may have grown to have development and learning delays.
I’m in no way judging the way you feel and your opinions about DS but your words are insensitive and upsetting

VulcanRay · 09/10/2019 11:16

Ok I’m going to dial down my fucked off-ness now because I’m actually quite concerned that you have a child being assessed for autism. You really, truly, sincerely need to work on your attitude and poor choice of language if there’s any chance you’re going to be parenting a disabled child OP. You got a bit of a pasting here because you have said some terrible things about people with DS (though I stand by your right to terminate for whatever reason you choose), but I wish you all the very best with your little one, may you never know the stinging, excoriating pain of people talking about him like he’s a burden who should have been nipped in the bud.

KennDodd · 09/10/2019 11:30

It makes life so much more difficult for them

Actually I would dispute that with regard DS op. I think people with DS can have a really lovely life if they're well cared for, which as far as I've seen most are. In fact if I had to place a bet, my money would be on people with DS scoring themselves higher for happiness than those without. I think the families may well have a harder time though.

RufusthebewiIderedreindeer · 09/10/2019 11:32

Just going to refer to the OP though ive read the thread

The cut off for an amnio and further testing when i had my first child 20 years ago was 1:250. I was 28 when i fell pregnant and 29 when i gave birth

Ds1 was under that but i didnt have the amnio as i was worried about miscarriage (miscarriage was already a risk in the pregnancy)

It seems that now that there are a lot more tests available so as others have said further testing is probably your best option.

itshappened · 09/10/2019 12:07

You are low risk. I think you need to trust what the doctors are saying.

To give you context, I had a 1:20 at my 12 week scan based purely on them noticing a small amount of back flow of blood in the umbilical cord. They still said it was very unlikely to be something to worry about based on the scan measurements, my age etc. The subsequent harmony test however then showed it as 1:5. The amnio confirmed DS. We had no other signs though, and I should have been low risk like you, as none of the usual indicators could be seen.

I find your posts very insensitive as this was one of the worst things I have ever experienced and I had to make some very difficult decisions at that time, that I have to live with forever. Your odds of having to experience something similar are very low statistically, but if you want more clarity then of course pay for a harmony test to put your mind at ease. but please don't think either option is easy to make, and be careful how you are wording your posts, as some are verging on being offensive.

57Varieties · 09/10/2019 13:02

Ok I’m going to dial down my fucked off-ness now because I’m actually quite concerned that you have a child being assessed for autism. You really, truly, sincerely need to work on your attitude and poor choice of language if there’s any chance you’re going to be parenting a disabled child

This. You could really do with bucking up your attitude. I have a child with ASD as well so I do understand that the thought maybe of having another child with difficulties is daunting. But even if your baby doesn’t have downs they could have ASD, ADHD, or anything else. Nothing comes with guarantees.

57Varieties · 09/10/2019 13:21

DC1 has suspected autism, he's still a toddler. If he does have it, yes I would change it, of course I would. It isn't some fantasy gift that lots of people try and paint it as. It can be debilitating and so challenging for those with the condition. Why wouldn't I change that for him if I could?

This kind of thinking is just a waste of energy. I’m not going to pretend autism doesn’t come with challenges and for us anyway it’s harder as he gets older. But you can’t change it. All you can do is make the best of what you’ve got and accept that autism is an integral part of who your child is. Describing a disabled child as an inconvenience is just awful. My elder son has had some impact on his own life as a result of his brother being autistic. That is life in general. No one ever sails through without any problems. I’d never describe him as an inconvenience though

SleepingStandingUp · 09/10/2019 13:56

DC1 has suspected autism, he's still a toddler so you're planning on having a ""healthy"" child despite having a child already who may well have ASD. Did you not think about the hindrance and threat your existing child will have on this new ""healthy"" baby. Why would you do that to a new child knowing the impact having a sibling with that condition could have in them, all the opportunities they might not have because of their older sibling and his condition?

Yes I'm being goady but the point stands. You only want a perfect healthy child so your first borns life is perfect, but surely it works both ways.

missmapp · 09/10/2019 21:59

Ds1_is autistic. Ds2 has a genetic disorder. They both face challenges but no , I would not change them or magically remove their condition. I am very fortunate that they conditions cause them no physical pain. It makes them who they are. My wonderful boys.

Straysocks · 10/10/2019 09:33

All right, I'm prepared for a pasting but ... I personally do not know any families whose lives have not been enriched by someone one with Downs - and I have grown up in a large community of families with a Downs or other special/additional need. Enriched, truly, and so, so glad of the difference their child makes. There is more to every single one of us than our chromosomes, genes and abilities. All I have known is our community is determination, unconditional love and support, true friendship, self-belief, self-expression that is awesomely and purely true and a great deal of happiness. Are those not things to which we should aspire? All of us? We still find prejudice and discrimination, a lack of value and expectation, a failure of provision and understanding. There is lots to it, undoubtedly, and external support and information is needed and yes challenges but also more information than ever as we are constantly learning. So, to tilt this balance even further, I suggest you observe the many positives a child with Downs brings.

Passthecherrycoke · 10/10/2019 09:37

I mentioned before 2 family members who had babies with downs who died shortly after birth straysocks, their lives weren’t enriched