I'm doing another interview about DS and testing

[Thomcat]

So pleased to have the opportunity and that the press are doing their bit to get positive articles etc out there.

I'm full of things to say, positively brimming over but once again I thought I would share with you the opportunity to get a point across that you feel really strongly about. I'll do my best to work it into what I have planned to say about it all but bear in mind that i am unhappy about teting for DS and terminations being offered as though DS was the worst thing your child could ever be born with.

It'll also be about my preganncy, my feelings on having a child with DS etc but will feature heavily about the whole testing debate.

good luck with it thomcat

i hate it when people say 'poor thing' about my dd. i mean it has took me a while to get used to things but she has a learning disability she is not suffering with her health and she is bloody happy! plus it would never have been picked up on a scan either, like lots of learning disabilities

Who is the interview for TC ?

It's a brand new woman's magazine not yet launched so they are not yet disclosing the name of it. This is usual with new mags and is called project X or something until they start their marketing campaign etc.

Hope it goes well honey. Let us know when to look out for it.

TC, I really worry about a test for autism being developed. It makes me feel really sick thinking that people would choose not to have amazing children like my dd (and I'm sure alot wouldn't, such is the current 'phobia' of autism). I feel very strongly that if I had another child I would not have the test for DS. I DID have the test with both my children before I knew DD has SN. However, I feel very strongly that I would have continued with the pregnancy had I discovered my baby did have DS. Make sense?
ps Are you a journalist?!!! Just being nosey.

Thanks jakbrown. No babes i'm not a journalist but on first names terms with the girls at the Down's syndrome Association and they always ask me if I'll do an interview when the press approach them. I always jump at it cos a) I can't shut up! b) I have lots of positive things to sy and c) becasue of a) and b) I think it's my duty, one I welcome, to speak out.

GO for it TC!!
So much testing seems to be geared around DS, or is that me being paranoid? DS seems to be being highlighted and it shouldn't be. We know that there are other medical conditions that are not only harder to "deal with" on a day to day basis, but are also causing the children to suffer and their whole standard of life is compromised by their health. You just don't "very often" get that with DS.
It was mentioned before on other threads, but it seems that there is almost a wish to wipe out the existence of DS!! I can remember when it was talked about offering more tests to detect DS-I very selfishly thought-"where does that leave the likes of dd?" I suppose I was concerned more about the research, intervention, health matters not being needed so much and as a result dd's life may suffer.
There is also obviously the point that after having dd for 3 years of my life, I cannot imagine how empty my life would be without her and her big brother. She inspires me every day and until you have this beautiful child with DS, I suppose you would not realise the absolute joy that she brings. That makes me feel awful about my son, almost as if I don't love him so much. My only explanation is that now I have a completely different outlook on my children, playing with them always seems so full of purpose as well as being fun, perhaps that's why it's so rewarding.
Sorry to waffle TC. I am sure Lotties charms will win them all over, good luck and keep us informed please.

I did an interview with a couple who had a little boy with DS, just before we started to realise DD was having problems (I am a journalist, TC! , that's why I was being nosy). They were such a fantastic couple, really positive, and it was such a moving interview. I almost feel as if fate made me do that interview as they talked about so many emotions that I was later to go through.
Anyway, a question, people often ask me if DD's problems are similar to children with DS. I explain that children with DS usually have only mild to moderate learning difficulties and that they do not have an impairment of communication, social interaction or imagination so that their difficulties are less severe than DD's in many ways. Is this the right thing to say? I am always VERY positive about DS as I am VERY positive about autism. People want me to say it's all awful and terrible and, of course, there are days like that. But mostly it's life-enhancing. Ramble over!!!

Thanks Socci and jakbrown.

I would like to wish you luck Thomcat and hope the interview goes well. I do not have first hand experience of DS but today a school bus passed me and a young DS boy waved at me and blew me the most beautiful kisses and he made me laugh out loud and I can still picture his smiling face. I think he probably makes his parents extremely proud.

Socci, I think it's because the prenatal test for DS has been available for so long. I think there would be just as much 'fear' if there were tests for autism and other disabilities. It's the one 'syndrome' that is routinely tested for. I would be interested to know what perecentage of women who test positively for DS continue with the pregnancy. My friend's little sister is in her 20s now an has DS (she is desperate to get a boyfriend at the mo!). She told me a lovely story about how her sister turned round to her years ago and asked her why people always stared at her. My friend said, 'because you're so beautiful and special'. Her sister was ecstatic. Also, when DD was first diagnosed, I used to 'explain' to people at the park etc about her autism. My friend told me I should never 'make excuses' for DD. So now I don't say anything! I like to think DD gets lots of looks because she's such a sweetie! grin] ]

One thing you might want to cover, Thomcat, if you can, is that for many people the fear is not so much having a baby or child with DS, but the lifelong commitment element that could be part of loving a child with DS. Despite my advanced age I didn't go for CVS or amnio this time round, even though I really thought I would, and what will be will be, but my dh said to me, "Of course if our dd had Downs syndrome we would love her every bit as much if not more than if she didn't, but she might need us so much, and when we are dead, who would love her like we do?" Bear in mind we are older parents (41 and 47) which makes this a more pressing concern than if you are having babies in your twenties. I'm just saying this to maybe give you another perspective as to why people do test and terminate - yes, it's fear, but not necessarily fear of the syndrome or feeling that they couldn't cope with the child. YOu may think this is a totally stupid view, but just trying to suggest something you might want to address to alleviate people's fears in some way. And yes, of course, my ds might develop a mental or physical illness which would also mean he was dependent on us for the rest of his life - of course, who knows what life will throw at us .

I think you are much more of a person who lives in the moment, but there are lot of Eeyore-ish types out there like my dh, who does worry about the future (and being old, frankly!)

I understand but nobody knows what life throws up. My daughter needs lifelong care and I hope I'm there to be by her side learning and laughing with her until I'm wearing purple and drinking sherry in my 80s. The 'routine' nature of DS testing makes me feel really uneasy.

TC - you know my thoughts and feelings on this .

Is it the new conde nast mag btw?

It's not that I am anti-termination, each to his, on her, own, but I won't be saying anything that would condone it either. Someone else can do that interview if they want. .I don't beleive that a child shouldn't get a chance to live their life just becasue the parent may pass on and leave that child all alone. People with DS have every chance to live independent lives. And just beacuse DS can be detected why should it be eradicated? What about other disabilities that will make it hard for a child to live an independent life? Sorry Aloha but it's just always all about Down's syndrome and it annoys me. You don't annoy me, you must know that but it's just a bug bear as i'm sure you can understand.

I guess I've just never understood why DS is singled out for testing in this way, to the extent that if you decline to be tested people look at you as though you are slightly mad. It's not a condition that would leave a baby with no quality of life or a life of pain etc. I think that, like a lot of things, people are often afraid of it because they don't quite understand it.

My big fear with antenatal testing in general is not knowing where it will all end. I know I'm biased but I would hate there to be an antenatal test for ASD/AS. What syndromes/conditions would they try to test for next?

well tc you know what I think about all of this....... must try and get hold a friend's thesis - she looked at antenatal testing and this whole issue of 'informed consent'. One thing that stuck in my mind was that where people/woman had contact with people with ds the rate of keeping the child increased by something over 60%. Whereas woman who had no contact with someone with ds were more likely to terminate.

I think aloha is right - the worry not of coping day to day but what about when the parents etc are no longer there....... I know we never really think about it.

I guess we knew dd1 before hand would have ds and there was a higher risk for me with dd2 due to the calcification in the heart they found on the 20 week scan. We chose again not to have an amnio - figured we knew what to expect after dd1 but I also felt it was just ( for me personally ) too invasive..... As it turns out we were in the other half of the equation this time round and dd2 does not have ds.

In Australia - Brisbane in fact they are currently developing a test that involves something like a cervical sweep that can occur very early in pregnancy that will be less invasive than amnio and cvs but just as accurate - which is concerning - I think they were saying this test could be done around the 11 - 13 week mark from memory. Again specifically targetting ds. WIll try and see if I can find anything for you to read about it.

I guess my take on the focus on ds is that it is more 'common' and 'visible' I guess..... I could be wrong but that is what I figure iykwim.

Info is here -

last 2 paragraphs

here

here

oh ct you are soo right - the first question people - especially medical staff ask us - did we know before dd1 was born that she would have down syndrome... when you say yes they look at you rather strangely - you either get the attitude - you amazing martyr or you silly woman... depending on the person.... the implication seems to be if we knew beforehand then we would not have had dd1..... rather than - you did not know and only found out after the babe was born and then it is - you poor things!!!!

I haven't read your links eidsvold, but that is quite a concern. How many women out there choose not to have invasive testing because of the risk factor? Take that risk factor away...what do you have...more babies with DS being terminated!!
Personally not a very inspiring thought.

I understand the "lifetime commitment concern" to a degree, but am I being delusioned in hoping the dd will lead a semi/independant life. At this point in time I have no more real concerns about dd than I have for her brother, this may obviuosly change but I try not to look too far ahead and worry about what will be!
To me I have a lifelong commitment to both my children and I try not to let dd's disability cloud my view about our future as a family.
Does that make any sense? Sorry,probably not!

that makes perfect sense dingle .... I agree with you - I hope dd1 is able to lead an independant life and achieve what she hopes to...

On a personal level TC - a number of people expressed surprise when we announced the second pregnancy - even had a good friend ask me why I chose to get pregnant again - wasn't I worried about 'it' happening again!!! She then asked why we wanted another child when we had our hands full with dd1?!?!?!?! The other assumption from some medical staff was that I would want every test going... GP in the UK wanted to send me for fetal cardiac scans, amnios and so on... thank goodness we were not in the country by then!! He was quite surprised when I said NO and then told me I needed to prepare myself?!?! FOr what fgs!! GP here was brilliant - it was up to me - she would support whatever I wanted.

Thomcat,I hadn't given this a lot of thought until recently, particularly reading myfairlady's thread on the pregnancy board. I had a nuchal scan with ds and the 'risk' came out quite low, so we were advised that further tests weren't necessary. It turned out this was correct and he didn't have DS. But looking back, I think the unspoken attitude was that if the results had been different we would inevitably want further testing, and if we had a positive test for DS we should consider a termination.

I was on the maternity 'conveyor belt', assuming that what the doctors told me was right (I don't think this any more!). If the nuchal test had been different, I would have been hopelessly unprepared for it and have no idea what I would have done. I would guess there's also quite a time pressure once you're given the results, as the pregnancy would be getting quite advanced for a termination at that stage?

Don't know if I've added anything to the debate here, I'm rambling. I think what I'm saying is that I hadn't given much thought to what the nuchal test was for, it was just one in a battery of scans/checks/tests that seem to be standard for pregnancy these days. You have to actively opt out rather than opting in.

Beccaboo, you're right, it's taken as given that you will want these tests. I think this piece you are writing is really important, Thomcat, to change perceptions. A few friends of mine are pregnant and they seem to have a horror of disability. Why?!!!!! These children are so amazing and have such ability. It's their loss