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

[sweetmotherog]

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?

I suppose the thought of anyone or anything inconveniencing my boy really worries me

You are deranged OP. My younger brother has downs and he is the light of my life, an absolutely integral part of family and of our community.

Also OP there are plenty of disabilities which a child can have that can’t be picked up prenatally like downs and you just have to deal with. I don’t like to give a pregnant woman a kicking as I know only too well it’s a difficult time but you’ve really done yourself no favours with this post. If you do get more testing do it privately. Wasting NHS resources speaking to a MW and consultant on this is a nonsense.

I suppose the thought of anyone or anything inconveniencing my boy really worries me

If that’s how you feel you really shouldn’t be having more kids, downs, other disability or not.

My sibling with Downs is, and always has been, the light of my life. She is my safe place, my inspiration and my 'home'. Not a threat. Not a hindrance. For any concerned posters reading this, Downs Syndrome UK have a new helpline for people who are concerned. Their information is gathered from parents/families and people with Downs. Useful to hear from those with experience rather than skewed perception.

Such beautiful words about your sister @Straysocks

Your attitude towards your older child is obscene op. Please remember the majority of disability is acquired not congenital. I think you need to consider what your expectations of parenthood are.

I was given a risk ratio of 1:16 with my first, and 1:8 with my second. I wanted to be absolutely certain that neither of them had chromosomal abnormalities so i chose to have diagnostic tests: amniocentesis and chorionic villus sampling (CVS) as the risk in having a miscarrige -1:100 - was less than the risk ratios i was given. Both tests were clear. Pregnancy and birth are risky, and there is always a possibility that you could end up with a child with a disability. If you want certainty (in regards to whether or not your baby has Downs Syndrome) you have options for further testing. I find some of your comments insensitive, and quite frankly, offensive. However, i'm willing to give you the benefit of doubt because you may be feeling frightened, confused as anxious. If you want peace of mind, then look at your options for further testing.

This thread has made me feel so sad. I feel like downs = abortion and anything less than perfect in a baby isn't acceptable. Babies are not handbags, you don't return them cause they have a faulty zip.
I think we need more education about what it means to have a downs baby maybe from parents who can tell us what it is like to live with it, not medical people. In this day and age I think it's outdated to think disability immediately means a life not worth living. My limited experience of children with downs is from meeting them at toddler groups and that they have been no different to the other children. I particularly remember a little girl at toddlers who came with her older brother and their relationships was magical. They played together and held hands it was lovely to see. I think the brothers life was enriched by his sister.
I think the op needs to stop worrying enjoy being pregnant and bond with her unborn baby. It's part of her little family, the tests results were good, and while there can be no guarantees in life, the best advice is to enjoy what you have and don't stress about what you can't control. Take care and relax

Straysocks that was a lovely post. Thank you ♥️

I had a1 in 1088 chance 19 years ago and I was 37 . My son is at Leeds University and is stupidly ok . Maybe go for the harmony test that wasn’t available 19 years ago .X

A child with Down syndrome isn’t necessarily going to be severely disabled
DS is a spectrum and it’s impossible to know how severely an individual will be affected. My relative with DS is non-verbal, can’t walk, wears adult nappies, suffers from heart problems and early onset dementia. My DF has a 24/7 burden of care which has deprived me of my father and my DC of their grandfather. I don’t judge anyone who chooses not to risk putting their family in that situation. OP in your shoes I wouldn’t pursue this further with the NHS and would go straight for the Harmony test.

So many Down syndrome individuals lead full independent lives and for you to say you’d abort without a second thought is extremely shallow.

Anyway your results are very low risk, pay for your extra testing and good luck but all in your not coming across well at all.

But equally, so many of them don’t lead full independent lives, and there’s no way to tell in advance whether they will or not. I don’t think it’s shallow not to take that very serious risk. Nor do I think it’s fair to call OP unhinged, deranged or obscene because she chooses not to take that risk, in common with 9/10 British women whose babies are diagnosed with DS.

@AthollPlace I don’t think OP is unhinged deranged or obscene.. I do stand by shallow though, which is an opinion I’m allowed to take.

To do something so final would, without a doubt, have lasting mental consequences. The numbers here are low risk and while I totally understand the want for further testing the extra stress and worry over comparing results is only doing OP harm in the long run.

I certainly don’t think the OP is obscene for saying she would abort a DS pregnancy at all. I would have done the same. Her attitude towards a minute risk and thinking that merits wasting a MW and a consultant’s time on is ridiculous though. Her result is low risk. Just because Joan up the road had a lower risk means nothing. And the comment about never wanting her PFB ever to be inconvenienced is plain weird and makes her sound extremely childish and immature

Jesus! people come on mn for support!
How fuckn wonderful for some of you that you have a sibling/cousin with Down’s syndrome that live great lives. Anyone who chooses not to continue with a pregnancy because of suspected disability is not shallow! Surely those who have experienced life with a disabled person knows how bloody hard life can be for that person?
It’s absolutely disgusting that you are giving the op a hard time. She’s going through a hard time with a born child to think of in this situation too.. I’ve had an abortion.. because having another child would have had a huge negative impact on the lives of my children

This screening does often mean that the people you see in your day to day lives affected by DS are at the milder end of the spectrum.
screening can’t tell you how seriously affected your baby is the screening does tend to make it clearer where development is affected.

So for example, I have 2 family members who gave birth to babies who died shortly after birth. Those aren’t the children attending mainstream schools, or living independent lives. You don’t hear about those babies and increasingly they are not born, due to screening.

When we were going through this we had a lot of well meaning advice from people telling us how wonderful and happy children with DS are. You’re only seeing part of the picture.

How fuckn wonderful for some of you that you have a sibling/cousin with Down’s syndrome that live great lives

Wow you sound pleasant

@OkPedro

From what I can see people are offended by the OPs choice of phrase i.e "nip it in the bud" and the such like. Also, support for what. ? OP has been given a very low risk of having a child with Down Syndrome.

ALso , this:

How fuckn wonderful for some of you that you have a sibling/cousin with Down’s syndrome that live great lives

Fucking nasty.

Also, support for what. ? OP has been given a very low risk of having a child with Down Syndrome.

Exactly. Having had a high risk result myself, testing and the stress of all that when I was pregnant, I’m just rolling my eyes at this. It’s ridiculous getting het up over such a minuscule risk.

The choice of words makes it seem more of an attempt to air a “disabled babies shouldn’t be born” attitude than genuinely understand what “risk” is and how it effects OP in this instance. DS is not the only disability that her child could have and one should always be aware of others reading being hurt and upset by unnecessary phrasing.

There are countries where DS has practically been removed from the population. Some people are likely to see that as a good thing, some find it concerning. It all depends on your attitude to disability.

As previously mentioned, I have a child with Down syndrome. It is not a spectrum, you either have the extra chromosome or you don’t! The level of learning/development delays and health complications associated with having DS can vary in severity.
Any “perfectly healthy” baby can grow to have a disability that is not screened for during pregnancy or develop a serious, life limiting illness etc.
The sad thing about this post is that people are making assumptions about life with a disabled child without gaining a balanced view.
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.

OP if you're worried get the new test.

Pregnancy is a time of great worry (as is all of parenthood!). If you can alleviate one worry then do so.

I'm sure there are lots of positive stories from people with or family of those with DS but we have a choice and nobody should be judged.

Just to be clear, OPs original concern is that she didn’t get as high a low risk result as her friend who is older than her!

OP. You ARE LOW RISK!! There is a really tiny chance of your baby being affected. Really really tiny. The cut iff for high risk is 1:500.

@Gilbert82 I’m sorry if my use of the word spectrum offended you. I tried really really hard to word my post in a non offensive way but something was bound to be wrong. I hope you can be reassured that I only meant spectrum as in “levels of affectedness” and not an implication that you could be a little or a lot Down’s syndromes