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I really need to rant, again, about people and their risk of "having a Down's"

84 replies

thomcat · 06/09/2007 10:43

FUCKKKKKKKKKKKKKKKKKKKKKKK!

Do people suddenly forget that the child inside them is still their child when they are told that their blood tests are 'high risk'. Does the oh so terrible fucking risk suddenly dehumanise them?

Even that word 'risk' is starting to piss me off.

They go from being happily pregnant with their baby, their wonderful son or daughter to be, to being horrified that it could be "a Down's".

And what the fuck is it with saying stuff along the lines of 'oh i was high risk but went on to have a wonderful and healthy baby'.

Fuck you!

My daughter is wonderful and healthy, she also happens to have Down's syndrome.

Aggggggghhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh

Sorry for proper anger coming through, we can blame it on the hormones if you like but I'm still really cross.

I can make a million excuses for the language and terminology used on 'oh no my baby might be a down's' type threads but kiss my arse today, I don't give a shit, they should think a bit more.

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berolina · 06/09/2007 10:48

I'm with you, TC. The 'risk' of 'having a Down's baby' thing pisses me off no end too, and I don't have a child with DS (although am close to someone who does). As if DS were nothing but a dreadful calamity.

Is it another AN thread?

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mymatemax · 06/09/2007 10:54

Rant away, pmsl at your opening line..


You have every right to be pissed off, hormones or not.

I hate it when people say "Oh i don't know what i'd do if i had a child like that"..

Insensitive ignorant b'stards.

You don't get a choice you love your child, for me the disability is just a little added extra.

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thomcat · 06/09/2007 10:57

Yes it is.

It must be the hormones as I never get quite this cross, but jesus, it's a weekly occurance.

I should learn not to click on them tbh.

And all the 'oh no poor you, I was high risk but I ended up havign a wonderful healthy baby' just makes me so cross.

And 'oh just have an amnio' thing - so casual. What are people doing with the results if it show's their child does have DS, that's what needs to be thought about. If you know what you'd do, have thought it through, painstakingly thought it through, then have an amnio.

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Tiggiwinkle · 06/09/2007 10:59

I know just what you mean thomcat. I hate it when posters write that they are "terrified" their child may be autistic or have Apserger's. I have two DSs dx with AS and it really annoys me that people think it is such an awful thing!

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berolina · 06/09/2007 11:00

Don't get me started on 'just have an amnio' (perhaps also coupled with 'and then you'll know for definite that it's healthy' )

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thomcat · 06/09/2007 11:01

Ohhh, at least I can come on here and release some of that anger to people who really understand.

Thanks.

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alycat · 06/09/2007 11:02

tc I'm with you on this one.

A good friend of mine who is mature (early 40's) was preg with no 2, she had every test going and fretted about 'what ifs'

I felt offended and hurt, she loves my ds (or seems to) but obviously only perfect babies for her...

Also I was cross at the weekend as when the programme announcer was giving details of the drama 'Coming down the mountain' on Sun he said a 'DS boy' rather than 'a boy with DS'

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berolina · 06/09/2007 11:02

How long have you got now TC? I'm 38+6

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berolina · 06/09/2007 11:04

I've just seen the thread I think you mean. No wonder it got you going

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Niecie · 06/09/2007 11:05

Have to say, despite being 37 when DS2 was born, I didn't have the tests for DS as I thought that there were worse things in life to be challenged with. All I wanted was a healthy happy child regardless of whatever syndrome they are supposed to have.

I don't have a child with DS by the way, but I do have one with AS and even if there was a test I wouldn't change him for the world. He is who he is and he is gorgeous.

The only thing I can say in the testers' defence is that they don't understand that when the child is born, it actually makes no difference what they have.

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MrsJohnCusack · 06/09/2007 11:07

I don't like it either, and I don't have a child with Down's syndrome. I really dislike someone being described as a 'down's baby' or 'down's adult'. So I'm not surprised it gets to you!

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thomcat · 06/09/2007 11:15

Thank you for understanding and not all thinking aI am being an uncaring hormoaal witch (even though I know I am!)

Berolina - I'm 37 +3

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slowreader · 06/09/2007 11:23

Forgive me for intruding but don't you think the NHS is a lot to blame. They offer the tests as routine and expect you to take them and the statistics that come with them. I had a horrible time with ds (first child- me dead ignorant- believing everything I was told)
(His AFP result was so high told to come in and prepare for termination). Refused all tests with 2nd child and was treated like completely irresponsible fool. Not just by one person- over and over. Why are the tests offered routinely to healthy women? I am sure they cause more harm than they save.

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Peachy · 06/09/2007 11:23

I agree Thomcat, fwiw when I heard DS3 might have had Downs it made me bond more and I became extremely protective.

And right now (also while hormonal) I find it nigh on imposible to type 'yeah my baby ahd a high risk of Downs Syndrome, he didnt have it though. mind you, he's severely autistic instead'

Agree with you, fuck them. A baby is a baby

(Can you tell i'm having a bad day?)

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foxybrown · 06/09/2007 11:24

I was given a 1:5 risk at my 11 week scan.

I admit it was fear and ignorance turned my world upside down having no experience of this.

I hope you feel better for your rant, however it has made me feel rather sad.

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Saker · 06/09/2007 11:34

I do understand and the way people write and phrase stuff is horrible sometimes and that thread is definitely not good. The emphasis is always on how they feel and doing things to put their mind at rest etc.

However I suppose most of us wouldn't deny that life with a child with special needs can be a lot harder than with a NT child and I suppose that is a frightening prospect. But the casual way that it is discussed and without reference to reality is quite offensive.

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thomcat · 06/09/2007 12:03

The NHS have a lot to answer for Slowreader yes but they can't be held responsible for the attitudes I'm discussing that uspet me sometimes.

Peachy - hugs to you mate. Yep you and I biting our tounges together.

Foxy - sorry this thread made you feel sad. I'm not entirely sure in what respect , ie did I upset you, but either way - sorry.

Saker - absolutley I don't deny that having a child with SN's raises the odd problem or 2, but the reality of having a child with DS is nothing like people imagine and in many ways DD1 is an easier child than DD2. But it is the terminoligy and casual attitude that is upsetting and the way the child seems to be dehumanised once peopel start discussing the 'risk' of it 'being a down's'.

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Peachy · 06/09/2007 12:15

FWIW on the thread thats running atm about high riosk, the Mum has come back and said she won't have amnio as she doesn't want to risk a miscarriage whatever the utcome

Which is a positive

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thomcat · 06/09/2007 13:06
Smile
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rubberduckquacks · 06/09/2007 13:24

So its not just me then. I don't have a child with DS but did have an amnio due to concerns with my first. When we got the results I was really upset when we told everyone the results as the comments were "thats good news" What a relief" "now you can enjoy the pregnancy" All of which I actually found really hurtful as would people have said the opposite if the results had shown DS? it was my baby regardless of what it had growing and living inside me - my flesh and blood and would be wanted and loved regardless. was alot wiser 2nd time round and didn't have any tests and enjoyed the pregancy so much more just waiting to see what mother nature would bless us with.

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thomcat · 06/09/2007 13:30

Hi ruberduckquacks
That's just it isn't it. "Oh thank god, what a relief" comments are just ow, ow, OW.
Whatever happens, whatever the parents decide to do that child is still their child.

Fetuses that may carry an extra chromosome are still babies, still human beings, still deserve the same respect and consideration as a baby that has one less chromosome.

And babies born with that extra chromosome are still healthy and perfect, and wonderful anmd loved and wanted.

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divorcee · 06/09/2007 13:31

I used to feel this way, when my daughter was younger. I hated the 'don't care what I have, as long as it's healthy line'

I've mellowed now and fully understand where they are coming from. No one knows how it feels until it happens to them. It can be enriching (and of course all children are wonderful) but it IS hard work, you have to fight for basic things, you don't know how to deal with LEA or NHS incompetants. It's a struggle and it's a worry. Why would anyone embrace that?

Of course people will be scared not to get the norm. If it happens they'll cope (mostly) and love and fight but you don't go into a pregnancy not wishing for everything to be fine.

It can feel like an insult to our children that someone doesn't want one of their one but it isn't personal

I would change things for my daughter if I could, love her more than life and admire her stubborness and coping but I would make it easier for her in a heartbeat

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mymatemax · 06/09/2007 13:41

I do believe the NHS have a lot to answer for, there was a lovely story in our local paper this week about a little baby born 10 wks early, with ds & serious heart conditions - it was such a positive story about how she astounded the drs with her recovery etc & after going in to organ failure & having open heart surgery is now back home & a beautiful little healthy 5 month old & how everyone in the village has supported them.
BUT the mum said she was sent home with a sick prem baby with DS & no support from the hospital & its only with the help of LOADS that she has coped.

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NAB3 · 06/09/2007 13:44

I agree with Peachy. As soon as there was a chance our child would have problems I felt much more protective and immediately wanted to know the sex. The sonographer had asked me why I hadn't had any tests and then they seemed surprised that I refused an amnio point blank.

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thomcat · 06/09/2007 13:48

I know all thast divorcee, and I understand it, of course I do. I know most people don't say 'I'm really hoping my child will be born with DS'

Still doesn't mean that I don't get very cross with people's terminology though.

And their 'thank god it's not a down's' comments,
casual attitudes towards amnios and CVSs, the sudden dehumanising of a fetus when discussing whether it might be 'a down's' or not,
the way that it's wonderful and happy news that the child doesn't have Down's even though the parent wopuld have had the child regardless
The way a baby that doesn't have DS is wonderful and healthy, implying that children with DS aren't

and so on and so on.

How can I be a mum to a little girl with DS and not sometimes be upset by people's casual comments?

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