To think you don't see many people with Down's syndrome anymore?

[Neonoen]

When I was a school there was a boy with downs syndome in my class. At secondary there was the first boy and then another one too.

I worked with a man with Downs syndrome at my first job (he taught me how to use the photocopier the first day after I wasted a whole reem of paper ). At the same time there was a woman who travelled on the same bus as me with Down syndrome and another who worked in McDonald's.

Yesterday on the TV they were interviewing that man who has the lead role in a new film (he has downs). DS asked why he spoke like that, I explained and then realised none of my children know what Down's syndrome is or have ever encountered anybody with it. There's no children with downs in their schools, no families with any members who have downs and no businesses that I can think of who employ anybody locally with Down's syndrome.

Other than the SN session at the local pool, I can't remember when I last encountered anybody with downs.

Is it just me? Is it a result of advanced ante natal testing?

In fact thinking of it I'm surprised at the lack of any experience my DC have of people with disabilities.

I really don't want to offend with this and hope I've used the correct terminology.

I just don't think narratives like this are ever neutral, the Sally Phillips one is as biased as the medically bleak one, but perhaps what we need is people to be exposed to both.

This is exactly what I think should happen. A crossover in between the medical and social worlds would facilitate this. There are several disciplines within medicine where this is already ongoing, and it makes a huge difference to patient care.

It does come across as incredibly patronising when you say that another woman in your situation may have terminated because of the language the doctor used, and suggest that 'the facts' are simple, easy to provide and keep up to date and have the same significant for all women.

Sorry if you feel this is patronising, I don't intend it to be. IME (from being chair of a support group and members of various others, as well as a member of a medical ethic consultation group at our regional teaching hospital) the language used is important. The tone, language and information provided at the time of diagnosis can have a massive impact on the decision making. Not just at an antenatal level, but across the medical sphere where patient/service user decision making is required. I never said at any point that information will have the same significance for women, or that the wider picture is never given.

I do however stand by the notion that foetal medicine should give out literature that they have been given (if they have been given this) It is their responsibility to refer women with foetal anomalies to the relevant disciplines and as they are the first point of diagnosis it would be most appropriate for them to pass out the leaflet, if it was wanted.

So foetal medicine units should signpost and women should be able to access to a range of sources of information?

I don't think anyone has suggested anything different to that, have they?

Upon reflection - I wish this test could be put out of existence . I really truly do

You wish that a test which makes it easier for potentially significant conditions to be diagnosed could be put out of existence meaning that the only way for women to get accurate information is to undergo a painful, invasive test and risk miscarriage?

Would you like the costs of raising children to become secret too, so women don't decide to abort for financial reasons? What other information should become difficult to obtain to fit with your own, personal morality?

Or maybe the positives of raising a child with a need should be shared more?

Or the fact professionals are not always right??

I was told my daughter would never walk or talk.... she does both.... people are good at focusing on the negatives of possibilities but what if the results are wrong? What if the child is higher achieving? What if they aren't higher achieving but love life and are pure inspiration in what they achieve?

A test can't tell you any of that!

More info, no argument. Argument is with trying to get rid of the easier, less invasive test. What's the point? To remove women's ability to make choices.

I would like to think it's because in this day and age people with a learning disability are not singled out and noticed because of that.

very true Spotty there needs to be more positives whilst of course its every womens right to terminate a pregnancy for whatever reason, generally professionals are very negative about disabillities my son has autism and learning disabillities he goes to a special school and is non verbal however hes loving and full of fun hes a very determined charachter it took me a long time to accept his diagnosis but lifes good again there is also a fair bit of support in my town from a thriving special needs community which helps a lot.

I think the less invasive test is good. I nearly miscarried my baby due to having amino. Anything to prevent miscarriage I think is a good thing.

Having already one child with sn I did not feel I could cope with another. I don't have a positive narrative spotty .

Quite head of the hives.

I'm really struggling with the 'women might decide not to terminate if only the doctor had said something positive' argument.

It's so patronising and simplistic.

Of course a non-invasive test is good news. It's optional - women can choose not to have it.

Upon reflection - I wish this test could be put out of existence . I really truly do

Thanks God that's not going to happen.

The test is here now, it will stay and families can make their choice.

I just find it very sad that the likely outcome is that the population will decrease as an amount of this - for personal reasons (I wont go into) I find this hugely sad.

please allow people to express their concern and discomfort with the ethics of this situation

I also find it concerning that the term "women's choice" is being bandied about, surely to terminate a child with DS should be a choice made by the family, for the family- it's not even comparable with an accidental pregnancy

I use the term 'women's choice' very specifically, definitely not bandied about.

In the majority of instances, decisions about a pregnancy will be made by two parties or more, although ultimately the legal right to make a decision about her pregnancy falls on the woman who is carrying the baby.

It is her and her alone who can legally and medically decide to continue or interrupt her pregnancy.

I don't think we should dilute the agony of this situation by saying that it's a 'family choice'.

I think agony is the right word, and I really don't want to argue with you

One would always hope that this decision (in this DS scenario) would be a family decision though- and well thought through, that's all- as its so momentous

IT can never be a choice fir the family, that implies a mutual decision. Unless you are advocating forcing a woman to contiue with an unwanted pregnancy you must see that it us the woman's choice, she has the casting vote so to speak.

I didn't really discuss the screening tests with my DH. I told him what I was doing. What could he say?

'I would like to think it's because in this day and age people with a learning disability are not singled out and noticed because of that.'

You have only to read the benefits cap thread to be disabused of that notion entirely. Seriously, what a naive thought.

Most people I think would prefer not to have a child with problems. Whether or not you obtain a termination or not us more a reflection on how you feel you would cope with the outcome.

I know not every pregnancy can be screened for every cause and indeed some causes of disability happen after birth. Some people choose not to cope with that either.

stopfuckingshouting

The data from the bma study shows the opposite - more women chose to continue with ds pregnancies. Link is on the other thread about this from a week or two back

I agree expat.

And the appalling treatment of people with disabilities on a governmental level is something to express concern and discomfort with the ethics of. Extremely.

Whereas the choices other women make about their health care during pregnancy simply is not.