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 only realised I realised that the DC couldn't recognise somebody with DS. As children we could, but can this generation of children?

Personally I see this as a positive thing- your DC then get the chance to meet people with DS as individuals instead of with preconceived ideas.

If there are only a couple of pregnancies per year in Iceland where Down's syndrome is detected (perfectly possible given the population size I would imagine) then it's not exactly a reasonable sample size to try and draw conclusions from.

TBH, those who say it's a pity that there aren't many children with Down syndrome around so today's children won't be used to it - how many would think twice about giving birth to a child with disabilities? Especially as it's anyone's guess how severe the disability will be and you need to acknowledge that you may have to completely change your life, forget having more children or a career or simply a normal life because you will be a permanent carer?
I can honestly say that I would think twice and probably go for on abortion. I don't agree with the notion that we should have some kind of token disabled people so the society doesn't forget their existence. It sounds impersonal and cruel and reduces the children to some lab speciments merely existing so we can stay informed.

If there are only a couple of pregnancies per year in Iceland where Down's syndrome is detected (perfectly possible given the population size I would imagine) then it's not exactly a reasonable sample size to try and draw conclusions from

On another thread it was stated that the number of pregnancies terminated for DS in Iceland last year was 4.

And Iceland is well known for being a feminist pro women country. And Ireland is not. It seems people like to say they are pro-choice but their is a veiled judgement when women actually exercise that choice....

I know 4 children with downs syndrome.

One will be about 9 or 10 now and is in a special school.

One is 6 and in mainstream school and she is absolutely hilarious.
The other 2 are in nursery, (both aged 2) and they are very different in their needs. One is very bossy and likes her own way, the youngest of 7 and completely pandered to and treated as a queen, the other is shy and just wants his mum. He's not long started and being surrounded by children, some that have disabilities (downs syndrome, autism, children who are tube fed, children in wheelchairs) and some which do not I think he feels very overwhelmed.

perspective21 how sweet is your boy? He seems to be thoroughly enjoying himself on those pics.

I also see a fair few adults with downs syndrome when out and about.

I see more people out and about and living with DS because thank god society is more accepting than back in the 70's or even 80's when institutions were the norm and I remember my neighbours daughter who had downs was refused a heart op because she had downs . She sadly died in hospital never reaching her teens.

Down syndrome is not the only ld.
You will still get a %of people with ld thru accident illness prematurity or other conditions not yet diagnosable prenatally.
So yes everyone needs to be aware and tolerant ...what ever your prenatal decision would be....

I get why people make a decision prenatally on diagnosis (whichever way) but you may still later be in position of having a child with ld without that choice .. you can't test out everything. Not yet.

So Yeh everyone needs to be informed that a person with ld may not mean life or careers are over for them or the parents... it's a different challenging for sure...

Oh and just to let you know my middle daughter has downs and I have a good career in a financial industry and no I'm not her carer either.

Even at 4, it is statistically a very small number. Assuming that the value of 93% given upthread for UK abortions is correct you would need a far larger sample to be able to conclude in any meaningful way that the proportion of abortions in another population (e.g. Iceland) is significantly different.

Yes I agree Statistically.

I do sometimes think some posters are thinking, if not outwardly saying:

You WILL have a child with Down's syndrome. Whether or not you want to.

Baffles me, it does.

I know six children with DS living locally, but my daughter has SN so I'm probably more aware of them than the average Joe. Two are adopted, so their parents actively chose them (and birth parents gave them up? Not sure why they were in care) two I know were diagnosed prenatally and parents decided to continue, two I'm not sure.
My daughter's condition could not currently be diagnosed prenatally, but in the SP documentary was a man who had performed the first prenatal whole genome sequencing on his own son, so presumably in the next couple of decades that will be possible on a bigger scale. Then we can screen out anything with a genetic basis - DS, autism, tendency to diabetes or heart disease, red hair.... There are some massive ethical questions to answer about what constitutes a valuable human life? Most families I've spoken to with a child with a serious genetic condition would choose PIGD or amnio testing in a future pregnancy, whilst at the same time advocating for best quality of life and treatment for the affected individual. I'm not sure what decision I would have made with DD if I had known at 12 weeks that she has an (assumed) genetic epilepsy. Don't get me started on whole genome taking a few weeks for an unborn baby but years for one already here, we fall see a geneticist next week and she is nearly 2 years post diagnosis. Her condition has a massive spectrum of outcomes and she is the very mild end, the general prognosis is catastrophic. But the genome couldn't tell us that she would be sweet, loving, funny, determined, musical and complete our family. There is so much more to each of us than the sum of our chromosomes.

im a geneticist - human development is my background

Trisomy is one of the most common reasons for pregnancy loss - with three 'doses' of a large number of genes the foetus often cannot survive. The only ones that are sometimes Compatible with life are sex chromosome tridomies, t13,18 and 21. Partial mosaicism of 8,9 and 22 is sometimes surviveable.

You can be a mosaic of trisomic /normal cells, or have various other modifiers and that leads to the spectrum of severity other posters have mentioned. Some children with these conditions live good lifespans and have an excellent quality of life. Some are severely affected and sadly die before/soon after birth.

I found the Phillips documentary disturbing - she was arguing for interference in the bodily autonomy of the pregnant woman. It is the choice solely of the pregnant couple as to whether they continue with the pregnancy or not. It's a hard choice to make and there should be no compulsion, or outside interference, only impartial counselling from their doctor.

If they continue then that is their choice, they should be supported and the child will be loved and a valued member of society
If they decide not to continue that is their choice too, and society has no place to comment.

Better antenatal testing is a good thing because it allows fully informed choices to be made. The data actually shows that more women chose to continue with ds pregnancies after harmony. Phillips is also incorrect that this would wipe out people with Down syndrome. It's not (generally) caused by a faulty gene that can be bred out. It's caused by a spontaneous error in cell division.

Children with ds and other trisomies are valuable human beings, as are all of us, disabled or otherwise. But informed choice is important too.

So, as I thought - you can't terminate for red hair, or boys, or height, so nor can you for DS?

You'll have the child.

X post. Above to Milo

And I also have good career with ds who does not have downs but another syndrome and is on complex severe end of ld. So like down syndrome but severe end of spectrum.

Tolerance is key when I am out with him

. I think that can be hard when the narrative is on the side of termination of people like him.

How can a narrative that says test and terminate down syndrome (and therefore all similar) also promote tolerance of down syndrome and all other lds.?

It'S not about token disabled but tolerance because you aint ever going to make all lds disappear .

I have grown up with a close downs relation, so it something that I notice.

I see/ know quite a few downs people in their 30's/40s.

Within the past 5 years, two of my friends have had downs children.

But this post has made me think, and you are right in that I haven't seen many downs children around (except my friend's) for a while.

We are so lucky to have both antenatal screening and access to safe terminations.

And I absolutely support right to choose for any pregnancy on basis of tests whatever. .it is your choice.
but there is it seems to me lack of awareness of all other possible conditions. Illness accident... You don't get a guarantee.

You can currently terminate for any reason up to 24 weeks, and for serious disease, which DS would currently qualify as, to term.
The improved genetic diagnosis would potentially massively extend the information we have on an individual's disease potential and their physical characteristics and society has some decisions to make on what constitutes a reason for termination for medical reasons.

'No one should be judged or given a :( face because they have made the decision to terminate a pregnancy because of this screening' I agree with this. Some people feel able to bring a child into the world with known disabilities, some don't feel able. No woman should be made to feel guilty for deciding to terminate a pregnancy for any reason.

Interesting thread.

I knew loads of kids with downs when I was growing up, partly because i had a disabled family member but there was also a kid at church, one in my class etc.

I very rarely notice anyone with downs now and although most of my friends had kids aged 34+ not one had a baby with downs.

I didn't have any testing, despite being 36 because I felt it wasn't the right thing for me.

I suppose I wouldn't judge anyone I knew personally who terminated for chromosomal disorders, but generally I do think it's a shame, yes. I think society loses out by eradicating the more vulnerable members.

Nerr for me the sad thing is that the choice is available. You don't know what you can cope with until you try. I understand that by being given the choice at a stage where you know nothing about the baby, the specifics and the prognosis the overwhelming temptation is to abort. Through fear of the unknown.

I think it's sad that you have to make that choice without ever knowing or experiencing the positives that that life can bring, the smiles and the love. And I get that it's not all smiles and love, but a lot of it is and it's sad not to experience that.