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SN children

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Original poster

Testing for Down's syndrome

85 replies

Thomcat · 25/05/2005 21:09

Does everyone get that much info on testing for Down's syndrome sent to them by the hospital when they get sent their appt letter for their 1st official scan?

Blimey

It's mentioned in my appt letter, I got another A4 sheet on info on screening for DS, a leaflet on serum screening for DS, an A5 booklet on testing for DS, and a A4 booklet which also talks about it.

Is that normal?

I'm already not really enjoying this 'you'll be seen my the head consultant', 'we'll book you into Queen Charlottes as they have the best maternity dept', 'we'll get you an early scan booked' way of dealing with me.

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Original poster

Thomcat · 26/05/2005 11:02

wow popsycal, might want to know that, blimey, I'm, I'm.......... I'm speechless and jsut so happy. what a MASSIVE compliment and ..... WOW. Thank you. I don't know what else to say but you've made me feel very happy and if you were here right now you'd be gettign the biggest hug.
I'm just so pleased you feel that way and prod as prod can be that I was somethow involved in you feeling that way, wow, thank you, thank you, thank you.

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popsycal · 26/05/2005 11:03

bundle · 26/05/2005 11:04

no offence taken tc . your "line in the sand" is drawn differently to mine because of your experiences. I'm very glad that the diagnostic tests exist but often despair at the anxiety that the screening which takes women onto that step creates (ie the bloods, nuchal fold only giving a % risk, and most of us find statistics baffling)

Original poster

Thomcat · 26/05/2005 11:09

As far as I'm concerned D and I have been genetically tested and the results show that we are not carrying an extra chromosome. We've been told we are at no more risk that the next person. Normally translocation would mean that one of the parents is a carrier but genetic tsting show that isn't the case. i was hoping that that was that, results set in stone, nothing to worry about. Slight doubt forming after Tubular Sclerosis story!! But going to ignore and trust that the tests,a nd the results, we had are conclusive

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Fio2 · 26/05/2005 11:23

really off topic but my daughters escort for school has a 22year old son with down syndrome. He used to attend the school my daughter went to and now goes to a day centre. A couple of weeks ago the school went up London for a day trip and my dd's escort son went along to "help", he was put in charge of a few of the children and looked after them. I cant tell you how I beamed when she told me

pixel · 26/05/2005 11:25

Life's strange you know, sometimes you just have to take what comes. When I was offered testing for DS I refused on the grounds that I wouldn't terminate my child for that reason and that there were far 'worse' problems that couldn't be detected pre-birth. I'd accepted the possibility of having a child with ds because the test was available and I hadn't taken it. It never crossed my mind that my son could have asd but maybe if there'd been a test for it, it would have!

TC, I think one reason the doctors are being so 'attentive' to you is that they've got so used to having to cover their backs. They have to be 'seen' to be giving you every opportunity to make choices so that you can't turn round at a later date and sue them for something. WE know you wouldn't do that and that you want your baby whoever he or she turns out to be, but maybe they have met people who would. If you can look on their enthusiasm for 'testing' as a product of the blame culture, then maybe it won't seem so personal and a slight against Lottie iyswim? Not sure I'm making much sense actually!

Fio2 · 26/05/2005 11:25

the school my daughter gores to not went to, dur!

Toothache · 26/05/2005 11:26

Popsycal - Ditto! Hearing how wonderful Lottie is and how happy TC and D are.... I just couldn't worry myself sick about waiting for tests results.

I know a couple of DS adults too. They have a wonderful life! And they work too, just photocopying and delivering internal mail, but my goodness, they are the happiest people in the office!

Toothache · 26/05/2005 11:27

gores to Fio2?

Fio2 · 26/05/2005 11:32

LOL I cannot type today i meant goes, hehehe

Original poster

Thomcat · 26/05/2005 11:36

i love the way you girls can left me and the way we lift each other thnak you all for understanding, supporting and for popsycal, toothache and fio for sharing positive stories.

I met a woman the other day who said to me "There's some Down's syndromes' (aggghhhh!!!) 'that walk past where I live every day and thay all wave and everything'!
I ddin't correct her on saying they are people with DS not Down syndromes (!) but I didn say when I had the chance that the more I heard about people who had DS having jobs as classroom assistants, passing GSCE's, living independently, having loving reltionships the less and less surprised i was.

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Blu · 26/05/2005 15:15

I took part in a drama workshop last week run by adults with DS who are training to be professional drama leaders.

It was really good.

moondog · 26/05/2005 15:22

tc...cringe at that foolish woman.
People with Down's Syndrome have a life??! Gosh,thanks for letting me know....

Original poster

Thomcat · 26/05/2005 15:38

Yeah, it is like that, part of you wants to laugh and say 'Nooo, what they lifted their arm and knew to wave, and they were only 25, wow, amazing'! Still I enjoyed my 10 minutes worth of educating her in a subtle and very smiley way and resisted the urge to smash her over the head with my handbag and shout you're soooo stupid!

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Fio2 · 26/05/2005 15:42

I nearly fainted when i had a plumber round and he was cooing over dd and asked which school sdhe went o and i said the special school and he said 'what is wrong with her?" and I explained and he looked totally gobsmacked and then he said

"I dont know what to say to you now,,,,,,,,,,,er oh well she is lovely anyhow" and was cringing as he said it

obv I didnt employ him

Original poster

Thomcat · 26/05/2005 15:52

, "Lovely anyway"!!

I was speaking to someone the other day and we were talking about charities and I said I did things for the DSA and we talked about why, when i told him about Lottie he said 'ohhh no, oh God how awful, i'm so sorry, oh nooo, are you oaky about it'!

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Dingle · 26/05/2005 16:21

A bit of a mixture of emotions here!!! at other people's ignorance at the thought of hitting them with a handbag and by the support MN gives!

Health wise we all seem to be on a low, getting over a rather nasty tummy bug, but I am on such an emotional high. We had to have our electricity meter replaced today, and the man that came around to do it was chatting to me about Amelia. I was just sitting down to lunch with her and he was obviously listening as a was talking about the green cucumber, the red tomato...and encouraging Amelia to say the words back to me. He said how hard it must be!!!! I replied, "it's just our way of life now" I don't think anything of it and I try to bring it all into our daily routines.

I mean that in a totally positive way, I brim with pride at whatever she does and put to the back of my mind the things that she hasn't yet mastered- some she may never master, but hey ho- she is wonderful....

And really going off at tangents, ds(5, NT) has just been elected as his class representative on the school council because he had all the qualities that the other members of the class thought important; caring, sensitive, helpful...

I would like to think that he would have had those qualities anyway, but by living alongside a sibling with SN, I really feel all these qualities have risen to a new height!!

sorry for the waffle.

georginars · 26/05/2005 16:27

TC, I have never 'spoken' to you but reading about you and Lottie was a huge factor in me deciding not to have any testing whilst I was pregnant (DD was born last December). I did get sent nearly as much as you by West Mid with my booking in stuff btw.
I am a bit of a Mumsnet 'lurker' and don't post that much, but I love reading, and I just wanted to say that. good luck with the pregnancy!

Original poster

Thomcat · 26/05/2005 16:56

Again georginars, i don't know what to say, except, wow and how wonderful and thank you so very very much.
It's wonderful, ....thank you, you don't know how wonderful and what a massive compliment to lottie that is. lots of love TC x

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Fio2 · 26/05/2005 16:59

Dingle you are such a sweety

Original poster

Thomcat · 26/05/2005 17:03

Ahhh Dingle, your son is just so gorgeous, you must be so, so proud and rightly so, bless him.

Lots a love - TC x

PS you've made me crave a lump of cheddar and a lump of cucumber so badly now I can't tell you!!

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misdee · 26/05/2005 17:05

i also stood fast on almost no testing ebcauseof TC. i had to have fetal cardiac scans due to dh condition, but refused all bllod tests, invasive tests and nuchal scan.

Original poster

Thomcat · 26/05/2005 17:17

Bloody hell, and wow again, thanks a lot Misdee, and well done, makes me so proud of Lottie and of you to read things like this.
MN really does rock doesn't it! TC xx

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misdee · 26/05/2005 17:23

there are worse things to worry about IMO than DS.

Original poster

Thomcat · 26/05/2005 17:24

You're so, so right babes.

Anyhow, how are you and P?
Haven't 'seen' you around recently.
Are you both ok?

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