Testing for Down's syndrome

[Thomcat]

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.

I think it is. I suppose they are trying to be supportive, informative and trying to make it "OK" to want tests and react to them. Its prob gone too far that way though. I was 43 when I had DD, your friend's a baby

TC - I got all that info too. I decided not to have the tests either. I wouldn't have had an amnio anyway despite an abnormal result. I just had the 20wk scan to check the heart was okay.

Hope you start to feel a bit better soon.

I was given one leaflet about it - and at my 12 week scan, declined the tests.... the midwife was shocked i could do that! I didnt have the tests with Jessica and dont see why i should with this one. What will be will be and it wouldnt change my mind into aborting the pregnancy because of it. I would rather wait and see what happens. There was none of this testing in my mum's day so why should we need it now?!

But some people DO want it and would abort, me for one. But they should be a bit more sensitive to either choice.

TC you need to ask my sister who had a 2nd baby after her dd with DS was born. (she posts here sometimes as Sinclair)
I think there is more info now than there used to be, I know that with ds2 (2+ yrs ago) I was offered an amino because of my age (!) and also my MW suggested I might like to have a nuchal scan (privately) tho I didn?t. I did have the AFP blood test tho (not sure why as I wouldn?t act on it anyway) adn several discussions with my MW (which she instigated) about ante-natal testing and whether I wanted it/what I did want etc.
But no, I don?t recall a bombardment of info such as you describe. There?s no more reason why the new baby should have DS any more than any other baby is there, so they ought to treat you the same.

I hate the way it it made to feel that the terrible thing called DS must be found out about as early as poss by having tests so the mum can abort if she wants, I mean no-one would possibly want the burden of a child with DS wluld they! That's how it feels sometimes and I want to scream F.OFFFFFFF. It's so hard not to take it personally that people think DS is a terrible thing when I have and people I have got to know have such wonderful children who happen to have DS. What's so bloody wrong with DS? If you could test that your child would have terrible asthma or bad excema or would be a bit slow to learn and be dyslexic would it be okay to abort them? Uggghhhhh, I just hate that that feels like the reson behind being tested. Am I really being offered these tests just so I can find out and then prepare myself or do people/doctors expect me to not want it? Do you know what, I just wish there wasn't a test that could detect DS, I really do. With everything else you just have to take the card your dealt, you can't detect other thigs and I wish it was the same for DS. There would be a lot more wonderful people in this world without this sodding test.

TC - I agree. I took the test for Spina Bifida purely as I thought I'd be able to prepare myself for any physical and mental difficulties.

There are far worse conditions that a child could have that people would not dream of aborting as a result of it. It just so happens that chromosomal abnormalities can be detected in utero.

I know how you must feel TC but I am sure they most probably think you are concerned, thats all. As from my other thread you know "I" would be concerned and would want all of the tests and maybe this is what they are doing with you. They most probably want to reassure you everything is alright

TC I totally agree with your last post. I think a lot of it is just ignorance about what DS means, but there?s no excuse for that amongst health professionals.
Yes, would we screen for and then abort children with asthma or excema? How about those who have behavioural difficulties? where do you draw the line?
Don?t worry babes, we?re all behind you on this one.

I would abort for DS and for a lot of other things too. So what? It's my choice, as it is yours not to test.

I think if I was in your whiskers, Ms TCat, I would feel irritated that people were assuming that I would anxious, and re-assuring me - for soemthing I didn't need re-assurance over. The problem with that is other people deciding how you might feel instead of asking you, and worse, revealing their OWN anxiety about DS and other differences, which is, IMO insulting to you.

I don't know what the answer is - probably take a deep breath, ignore it, be pro-active in telling them how you do feel and what you do and don't want.

Have a scan and be open about the things you really do want to know about - e.g heart...and anything that may (or may not) be 'triggers' for any feelings or questions on your part, and just get on with it. I think the attitude of 'it's helpful to know' is a staunch one - as I have said before, I did find it really valuable to know in advance that DS would have a one-off leg design....but you can approach that just like any other Mum. You ARE just any other mum - just as special, just as excited, just as anxious about little bubb, as any other Mum.

XXXXXXX

Please don't say things like this on TC's thread!

Start an new thread if you want a debate about that ananti!

Sorry, posted that before I was finished coz my boss walked in.... now I can't remember what I was going to type!!

ananti - the test does exist , there's nothing I can do about that (unfortunatley) so I'm not saying you shoildn't have the choice to do what you want. if you had a child with DS already then you may understand how it feels to hear people talk about 'aborting them', it's not very easy. I still respect people who make this choice but it's not easy to hear that people think it's ok to abotrt a child just cos they have DS - that's 'so what'.
Maybe you can undersytand that, amybe you can't, I don't mean to cause any offence to anyone chossing to terminate for whatever reson they feel, I'm just expressing my personal feeling on a sensitive issue and in a way defending people with DS.

I declined the AFP test with DD b/c it's a statistically poor test. Of course, the better ones are more expensive, and we wouldn't let a little thing like the value of our children's lives stand in the way of the Almighty £, would we?

Will decline AFP again with this one. We are only given one scan in our region - at 13-16 weeks. Otherwise you have to pay privately.

I respect your choice too, Thomcat. Apologies for posting - stupidly hadn't realised that this was on the SN board. Just saw it in active convos.

I don't think you are getting more tests than other people though TC. I think big teaching hospitals are just more geared up for testing than others. I think someone said they had the same stuff at QCs, didn't they? I had four people in the room at my 20 wk scan inc two professors and I assumed it was because of my age, but a much younger friend said she had a similar experience at the same hospital.
So try not to get too upset about it - think of your blood pressure! And accept good quality care as your right. I think it might be a good idea to actually say something like, 'actually I'm not keen on testing because I love my daughter and don't think ds is a disaster' just so they realise this. Perhaps they have experience of other mothers who have a child with a disability who are significantly more anxious and think you will be the same.
And remember you are having a BABY and that is so wonderful that nothing else matters. It's LOVELY having a baby. ds says he would like more babies because 'babies are nice'. He won't be getting them, but I agree with his comments.

I think "they" focus on Down's because it is the most common "birth defect" (sorry if that language offends, I don't know what a better term would be) & it is detectable. Not because it is that much "worse" than other conditions that people might abort for, but it's the most likely birth defect.

If they didn't give TC this info then "they" would be guilty of not making sure she was well-informed about her options, because she may well be higher risk than average.

Is it possible that Thomcat or her partner have a mosaic translocation -- some of their organs/body has the extra chromosone, but most of their bodies don't? Did they test for it as a mosaic condition, TC?

gosh ananti - that's a sensitive comment to express to the mother of a child with DS. I don't think anyone's saying that termination shouldn't be a valid option, but "so what"? Is it really that easy to terminate your child.

The people I kno who've terminated for disability have often found it a harder decision than those who terminated because the time wasn't right. They certainly haven't been "so what".

I'm sorry.

tc, i know you feel very passionately about this but i think you just have to accept that not everyone feels like you do (in the way people like me accept how you feel, and respect it, but would never feel like that themselves) and probably the best way of approaching it is to send out info re: screening to all pregnant women.

you may remember that my pg with dd2 had a high risk of being Edwards (the next commonest trisomy, I think after DS) and I had an amnio to test for this. If it been positive then i would have terminated the pregnancy (most Edwards babies die after just a few days) but not everyone would take this route - indeed some Edwards babies do live for a couple of years albeit with profound disabilities, and they believe that is right for them. But that wasn't for me/my family and they might think badly of me for having decided that an Edwards baby's life should be treated in a different way from any other child. But I don't think the team looking after you should have sent no material about screening etc?that would single you out from everyone else.

Maybe you could even talk to the people involved -midwives, consultants etc - about how they handle women who have a child with DS, what kind of info you think they might send out..or even "sort" those women into another pile of letters and get the midwife/GP to ask personally about screening, with the booklets in a separate pile so they don't "automatically" get them. the govt runs "expert patient" schemes and this is exactly the sort of area where communication could be massively improved/tailored.

once you've got all this sorted, please enjoy your pg! (and sorry this is so long!)

foolysh - she is translocation DS but D and I have had genetic testing so we knowwe'rte not 'carriers' of the extra chromosome. She is a fluke transloation!

Aloha, no bluebear has confirmed I'm not getting more info, or being offered more than anyone else going to Q.C's. And yes I shall try and enjoy the attention I'm recievingand they will get to know us as a family and realise that to us DS is nothing and hopefully they'll see that with their own eyes when they meet Lottie.

I'm just sounding off about testing in general and thinking, personally, that the world be be a better place, less worry for mums and more lovely people in the world, if the test to detect DS didn't exist.

Thanks jimjams

Bundle, thank you for you post and I understand, respect and ttoally see where you are coming from re testign to detect for something like Edwards syndrome and listen I'm not sure that i could put myself through havign a child with ES, then again maybe I could, who knows until faced with it.

I know I'm being passionate about testing and DS and I am trying to still be respectful of peoples feelings, maybe not very well, but I can't help but wish still that there was no test for detecting DS, not no tests at all though you understand.

i hope I don't offend anyone by saying that and I say again I respect all womens decisions to do what is right for them, theri existing family and their unborn child.

TC x

thomcat - just wanted to say that Lottie is the very reason why I chose not to have DS testing when I was pregnant with DS2. both you and lottie and your story was the final thing that made me realise that I didnt need to test at all
thought you might want to know that
good luck

There was a profile of a baby on the radio who had Tubular Sclerosis (really awful condition, loads of tumours). It's an inherited gene mutation... turned out that the dad had the gene mutation in parts of his body & not others. Particulrly the dad had it in his testicles, which is why the dad was "normal" (brain and most of his organs fine), but the baby was horribly effected.

Thing is, if they just did a blood test on the dad, I think he would have come up as free from TS it wasn't in his blood. It was in his testes (& kidneys, IIRC). That's why I wondered if TC or her partner might have the translocation in just some organs say the ovaries or testes -- but none others.

I don't really know much about mosaic conditions, just occurred to me as an explanation of why Thomcat might still be relatively higher risk of having another DS baby.