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

[thomcat]

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.

[gess]

Haven't read the thread but almost posted exactly the same title yesterday!!! It is quite noticeable at the moment.

As you said TC, dangerous once you get outside SN.....

[thomcat]

Dangerous indeed. Need to go back to how I used to be with MN and stick to SN's ONLY.
Would save time and heartache.

Trouble is some people seem to want genuine help on dealing with coming to terms with their child possibly having DS and I'm so happy to help and chat to those people.

[bullet123]

It's ignorance. I know with myself that whilst I would never in a million years have considrered a termination if my baby had had downs sydrome, I would have worried about what it entailed. Now I know a bit more.
What there needs to be is more balance, more awareness of what downs syndrome means. A booklet in the waiting rooms at scans perhaps and access to contact numbers for support groups which people are told to ring before any decisions are made. There needs to be less emphasis on outdated worst case scenarios and more knowledge about it.

[bullet123]

It's ignorance. I know with myself that whilst I would never in a million years have considrered a termination if my baby had had downs sydrome, I would have worried about what it entailed. Now I know a bit more.
What there needs to be is more balance, more awareness of what downs syndrome means. A booklet in the waiting rooms at scans perhaps and access to contact numbers for support groups which people are told to ring before any decisions are made. There needs to be less emphasis on outdated worst case scenarios and more knowledge about it.

[thomcat]

I agree 1000%.
One of the reasons I put myself forward and did so many interviews when Lottie was younger.
I went to my local hospitals and gave oput my details and leaflets etc etc.
But a nationwide campaign needs to be organised through the DSA and for it to be kept going.

[JodieG1]

My cousin had a termination at 23 weeks due to the baby boy having down syndrome, was her second child as well. I was amazed actually and I know it was her choice but it did shock me. They had a funeral and she named him. It's not something I could or would ever do. I had nuchal scans but would never had have an amnio or even considered termination just because my baby wasn't perfect.

[FlameBatfink]

Another ignorance and fear person - there were no routine tests for DD, for DS there were, they gave me some ratio as if I should care and I really didn't - living was my only real desire! I had the whole "enjoy the pregnancy" now thing too

I would panic if I had a baby with Down's Syndrome, in the same way that I am scared of DD and her maybe/maybe not AS - but I am more scared of how best to raise her etc than of it itself.

Does any of that make sense?

I don't have a child with DS but the thread titles always seem wrong to me too.

[JodieG1]

Oh and she was told the baby had "severe downs yndrome" which I thought couldn't be determined until after the baby was born anyway?

[theslownorris]

I discovered MN when I was pregnant with dd4, at the nuchal scan we were given a "risk" of 1:14. The responses I got from TC at the time on a thread I started strengthed my decision not to have further tests. As it happens dd4 has a serious heart condition which wouldn't have been detected by an amnio anyway.

[TellusMater]

I can completely see why you are upset.

Do you think perhaps for some people it isn't that they go from thinking of theor babies to thinking of 'a Down's', rather that they haven't thought of it as their baby at all yet? So there is no dehumanising, just no humanising.

Although that's not much better really is it?

And although I never really 'humanised' my babies before they were born (even when I miscarried, I didn't really feel the loss of a child in the same way that DH did, more the trauma of the unfortunate circumstances surrounding it), I did not have the triple test, because for me it would have made no difference. I would not have had a termination, or even an amniocentesis, based ont he results, so there was no point in having the test.

However, and I think this is not unrelated, there is quite a pressure to have the test. My community midwife just took the the forms out of my notes and that was that, but at my 12 week scan there was actually a fair amount of pressure to have them done. Which I rather resented. Is it very uncommon to refuse them? Because it is refusing them, certainly not opting in. They are the default position.

[nooka]

Might have been a high degree of associated health problems maybe (heart problems and that sort of thing?). I had a friend that went through this recently. A very difficult decision to make, especially so late in pregnancy. They were told that the baby would be seriously ill and disabled, perhaps that was the case for your cousin. My family has had a number of children with inherited or genetic illnesses (degenerative disorders, sickle cell, severe epilepsy and DS) and from my perspective although all the children are lovely, it has brought heartache and difficulties, so I don't think it unreasonable to worry, especially as the DS tests are still very vague and I think most people find risk predictions very difficult to cope with.

[Laurney]

Hello everyone. New to special needs, but just wanted to say try not to get upset (which is of course impossible) but it really is just ignorance for people--they just get panicked because they have no experience other than other people's panic, and don't think through what they are saying. My dd (5 mos) was just diagnosed profoundly deaf, and a friend of mine who also has a baby girl said, Oh my god. That is totally beyond my realm of understanding. (And she's a doctor! Can you imagine coming across her in casualty????) Then she said, 'Do you notice anything wrong? No, you probably don't, not like I would because I have my [normal] baby. O my god, I don't know what I would do.' I was about 2 minutes away from saying 'Umm, yeah you do, Stupid, you'd be worried about what caused it, hope that's all that's wrong and your little one isn't sick, and help her in any way she needs youd to. And you'd love her even more, because you'd be protective. Otherwise it would be just the same, and thus I believe you could understand.' But of course I didn't say that, and now wish I had. Anyway obviously I can't not get upset, and so am a hypocrite!

[gess]

I don't know jellyhead- I haven't vaccinated ds2 and ds3 because I don't want them to be autistic- I want 8 year olds who can talk for starters, but I certainly don't wish my severely autistic child had never been born.

[Peachy]

Lurney welcvome to Sn . My ds3 (and the others) all failed their hearing tests (turned out 1 glue ear, 2 asd). When I wasn't particualrly upset when ds3 failed hsi intial tests, the HVa sked me- at teh clinic in front of both my sisters- 'don't you love him or something?'

Naturally I never saw ger again!

I understand ignorance and the fear of the worse complications- heart problems etc. But the system plays on that- after Dh and I left the amnio unit without having ahd one (we'd nto wanted to go but were bullied into it) they posted a leaflet to us called 'Your baby has Downs Syndrome'. not, you notice, your baby has arond a 0.5% (our risk) of having Downs Syndrome, oh no....


Fortuantely there were people with Downs syndrome in the unit where I nursed, I was key worker to a delightful chap who was certainly very severe (1-1 24/7 care) so I think in retrospect i probably ahd more of an idea of the extremes of the syndrome than those in the testing unit.

[SleeplessInTheStaceym11House]

i completely understand your and i don't have a SN child. I was horrified by the reactions of honey and billy one eastenders (saddo over here) but have come to realise it is quite a common reaction to a down syndrome child.

all children should be precious and loved however they turn out!

bet you have a lovely daughter who loves her lovely mummy!

[minorityrules]

Am a long way down the line and I am looking at what will happen with my physically and learning disabled daughter as an adult and I am no longer here to help her

A child with downs syndrome does have learning difficulties and may find living independantly very difficult (as will my daughter) When I was pregnant with all mine, I was looking forward to them growing up and had visions of them moving out, with partners in satisfying jobs and being a grandmother. I did think that far ahead

The day I was told my child had a disability, I knew I could cope with a disabled child but I remember crying into my mums arms "What happpens when she is 32? Random thought, but I really did see my life would never be the same again. Someone will need to support and care for her when I'm too old or not here. It is a lifetime you are dealing with it all and that scares people

Everyone who is finding others reactions difficult, when you found out there was problem, whether in pregnancy or after birth, did any of you really say Oh good? Or did you cry and mourn the child you didn't get and think how will I cope/ I can't do this?

You can't get cross with others for feeling shock and fear

Having a disabled child is very rewarding, dealing with one and it's needs is shite. I knew I'd cope with my daughter but now I know more....I would have been one hell of a lot more scared. If we got what we/she needed in therapy/education/health/equipment it would be fine, but this constant battle I hate, and if you think it's bad now....adult services are even worse

[stleger]

My friend is a vicar, he was a hospital chaplain in England. He hated having to visit women who had had terminations 'for Downs' who wanted him to say they had done the right thing. He visited them, many were far from home in a regional hospital - but he never felt able to say the words he felt they wanted to hear from him.

[gess]

minority- I completely understand (and agree with) your post, but I've also read quite a few of the posts that I think TC is referring to. TBH the one's that have made me gasp haven't been written by someone who has been given the bad news, or is facing a difficult decision but by others who say things like 'you can always get an amnio and terminate if you're worried about Down's' (just like that, no fall out, no tricky situations etc). One pregnancy thread had me shaking with anger (it was all a hypothetical chat about having a "Down's child" (or rather not having a "Down's child" - no-one was actually facing the possibility.

I do think its a bit weird to have a funeral for terminated child whose condition was compatible with life- i.e. for DS (think its different if it wasn't/effectively wasn't).

Adult services scare the beejesus out of me.

[McEdam]

stleger, he should have found another hospital chaplain who could have provided the pastoral care they needed.

[tobysmumkent]

Message withdrawn

[minorityrules]

Gess, those people scared and saying things like 'get rid of it, it's easy' (or words to that effect) don't actually know what downs syndrome really means. I knew nothing of cerebral palsy (apart from Joey Deacon on Blue Peter) and I was very ignorant.

Since having my daughter I know what it means and how it can affect people very very differently. I also know more about ASD, downs syndrome and epilepsy as I belong to a number of forums/groups and have learnt. Up to just a few years ago, I was scared of ASD children/people and was very ignorant. I now have met a number of people and am ashamed and embarrassed by my ignorance as I have learnt what it means, that is a spectrum and children/adults all present very differently and not the scary people I thought they were

Same for most people going through these tests, they want the perfect child and say it in tactless ways. They are personalising it onto to OUR children

Hopefully, with intregration in schools, the next generation will see there is nothing to be scared of, and some children with disabilities can lead happy lives (some independently)

Like I said, I'm further down the line and I no longer see these comments as an insult to my child, just people very scared of the unknown

[minorityrules]

I also think the medical profession can see a little of what the future holds. They give the worst case scenario sometimes as they know that dealing with a flapping child or carrying a small child with CP, is very different to dealing with an adult of 32

Many parents breakdown, get worndown or get divorced

The medics see this, they know the provision isn't there, they know special schools are being shut down and there someitmes isn't anywhere suitable to educate that child to it's potential. It's cold hearted but it isn't all rosy easy

It's bloody hard work and you are the only person able to fight your childs corner

I was heartbroken when I was asked if I wanted to keep my child or put her into care, but I can understand it now and I know that doctor was looking at the future

[minorityrules]

edit, NOT personalising OUR children I meant

[2shoes]

minorityrules please remenber that a lot of parents also cope and don't split up or have a breakdown.
of course haveing a child with any form of disability is a shock. But I hate all this talk of being healthy or perfect.
my dd is healthy and perfect and I bet yours is as well thomcat