A world without Down's syndrome?

[Hulababy]

Anyone else watching?

Interesting so far

And actually, the main message I took away was that it would be good if a balance was sought when educating expectant mothers about the reality (sometimes shit/sometimes wonderful) of having a child with DS.

I'm sorry I watched this program in tears last night on 17/10/2014 I lost my amazing Angel eve I was 18 weeks pregnant with her eve had downs syndrome but also severe foetal hydrops that where unfortunately incompatible with life .
I found out at 12 weeks eve had downs syndrome and it never crossed my mind to have a termination ,my aunt had downs syndrome and she lived until she was 60 she had a very happy and fulfilling life my life would have been without so much colour,happyness and laughter with out her in my life.

As someone who has experienced the nhs attitude to a high risk of ds in pregnancy I felt this programme was in counterpoint to that.

If there are 40000 people with ds in the UK then surely some stats can be produced abd shared with parents as to how profoundly affected the average person with ds is. For all I know Sally's son is the average face of a person with ds in the UK and not a privileged outlier.

the "worst" outcome then is a baby who dies most likely soon after birth...
for some that might be preferable to terminating in utero.

But surely, where possible, women should have the right to know? If we have the ability to prepare at least some of them, and give them the option of terminating the pregnancy, we owe it to those women to do so. Not to force parents to go through that utterly unprepared because people's feelings might get hurt?

Yes they should have the right to know and should be informed about available tests. Most women probably do scans so they would get details.of physical
Strutural. Issues. But also they should be told limitations of diagnostic and screening tests. It was a total.shock toe to realize there were thousands of other conditions beyond the down syndrome in the NHS leaflets..

And there should ot be an autaric assumption that positive for whatever condition = "we will book you in tomorrow for.termination" .

Hopefully this is not the case and it is more : the test shows this.
Here is information here is the appt with counsellor to discuss it

Not be automatic assumption of termination.

The talk of "overweight" and "no longer cute" adults with DS is pretty hideous - as though their lives are valueless and burdensome.

Not necessarily, sneer, I think it's a counterweight to the cutesey depictions of DS you get so often in the media, and the stereotype of people with DS as adorable eternal toddlers whose job is to provide innocence and magic for a jaded world. Those cuddly toddlers grow up in larger numbers now that there's far better medical care available for heart defects for instance, and the DS community is being affected in far larger numbers as a result by some of the nastier elements of living longer lives with DS - dementia, etc.

In the past, there was the perception that parents would outlive their child with DS because life expectancy with DS was so short, and now that's changing, we need to think more about adults with DS, ageing with DS.

Cedric - as someone not in the position of having to worry about whether or not I personally would have NIPT in future (cant have any more....) but also as someone who does have experience of DS children (in a school setting), the message I took away from this programme was certainly that there needs to be balance to the advice that expectant mothers are given (it should be factual and not imbued with emotion from either side of the argument, of that surely there can be no argument?) But I also, definitely, came away with the impression that we should all think that NIPT is a bad thing. End of. The programme itself had no balance. Can DS people be amazing and high achieving? Of course. Can they also be very very ill, with many complications from their DS diagnosis. Yes. We saw none of that. It also did not explain that NIPT also screens for Patau's, Edward's and Turner's syndrome. Two of which would most certainly not have sat well within this jolly view of what life with DS is like. I also didn't like the insinuation that anyone in favour of NIPT must therefore think that DS lives are not worth living. Lazy.

I'd be surprised if Sally Phillips won't be reading this thread, as she'll obviously want to know how her documentary was received and will probably be very disappointed and also, hurt by some of the very personal comments made.

Personally, I'm completely torn after watching. I was hoping for a bit more debate, yes, but I think Sally has been slightly misunderstood here.

It's an incredibly sensitive subject and I suspect everyone with a child with DS will have a slightly different view\story to the next, which is clearly what's causing the outrage as there was only really one viewpoint in this documentary. That said, I do understand her concern.

Argh! what an awful biased documentary.

What proportion of Downs babies born now will grow into these high functioning kids/young adults that attend mainstream school and fit in with their peers, obtaining qualifications and live relatively independent lives?

What proportion of DS babies actually don't make it because their physical issues aren't survivable long term?

Where were the older DS people, dying early due to premature aging or dementia?

Mind you Halldora ! Blimey not only writing an article for the paper but she's bilingual. Serious kudos lady.

I'd be surprised if Sally Phillips won't be reading this thread, as she'll obviously want to know how her documentary was received and will probably be very disappointed and also, hurt by some of the very personal comments made.

I've been assuming she was quite likely to read, but I'm somewhat baffled that you think people shouldn't criticise what was in many senses a piece of propaganda, presented by someone who is both comparatively privileged and who has a very personal stake in the topic, simply because the person may be reading.

I also understand SP's concerns - and a completely valid subject for a documentary would have been an investigation into what will happen to specialist medical knowledge and resources if the population of people with DS dwindles sharply, and/or if social attitudes change to viewing the choice to have a baby with known DS as selfish or ignorant or a drain on resources. I think those are completely valid concerns.

But that's not what this documentary was about. I appreciate that SP was trying to counter doom and glooming representations of DS by introducing the viewer to her own beloved and lovely son, to that very impressive American DS advocate, the gymnast, the Icelandic woman, the Corrie actor - but I think that risks falling into the other prevalent stereotype associated with DS, that they're either cuddly children or exceptional adults.

I wanted SP to put her cards on the table throughout the documentary, rather than making statements about the value of the lives of people with DS. I don't think anyone at all is disputing that here and now in the first world in 2016, unlike the recent past, but I cannot blame anyone for not choosing to be a parent to a child whose severity of physical impairment or LD cannot often be known before birth.

What did SP want? No testing? No terminations for DS? No terminations at all? Compulsory viewing of her documentary before someone makes the decision to terminate or not?

Again, an investigative documentary on what information women with pre-natally diagnosed DS are given by medical professionals/helplines/specialist associations would have been really interesting - but this wasn't it. Or an investigation into what resources exist in order to let people with DS lead independent/fulfilling adult lives, now they're living longer - and what arrangement parents of children/adults with DS have set in place in order to ensure their wellbeing after their parents die?

That was very much on my mind as an older mother doing pre-natal testing - I was 40 when I had my DS - if he had turned out to have DS, I would have had to deal with the fact that he would be likely to outlive his parents, with no siblings and no close family in the UK, and not a huge amount of family money. This would of course have had an impact on whether or not I chose to terminate a pregnancy because of DS, and I don't think it's a selfish position to take, to think ahead to the future of a child beyond your own lifetime.

I am a mum to 3 kids including a little boy with downs. I work full time as does my husband. All of my children attend mainstream school. It's not true that having a child with Down Syndrome necessitates one of you being a full time carer. These kid of views are out of date and apply to a minority. Many people today have to care for a relative in some capacity and combine it with work as do parents of children with Down Syndrome. I have to say my son is completely healthy, very happy and capable. All children are different. But in his case, I can't see any justification why anyone would want to terminate someone like him. He is a gorgeous little boy with a learning disability and that's it. Not every child is likehim and I certainly know children with and without Down Syndrome with bigger challenges. All we're seeking is up to date objective information. There is something like a 5% chance now that a child will have autism which increases to 7% if a child has Down Syndrome. No one will talk to the typical parent about this but it will be regularly discussed with the family of the child with Down Syndrome regulations asking each time if they want to terminate. It's things like this and odd articles in the times this week comparing Down Syndrome to polio that makes families like mine want to cry out for true and accurate information

The talk of "overweight" and "no longer cute" adults with DS is pretty hideous - as though their lives are valueless and burdensome.

not valueless
burdensome to their families - yes. The family of this man are really suffering with looking after him. It is impacting on the health of his parents, sibling and nieces/nephews.

Until you've been involved in caring for an adult with a long-term disability like this one it is difficult to understand the day to day grind. I'm not saying that his Mum would have had a TOP if offered - maybe she would, maybe she wouldn't - but I make the point again that it often isn't a benign condition

TBH, if I was pregnant and was offered an accurate prenatal test for autism and it was +ve, I'd strongly consider a termination.

No-one is suggesting that the disabled should be 'eradicated', or should never be allowed to be born - except possibly Phillips' offensive Nazi-Germany extrapolation in her radio interview.

We are talking about the choice to abort a disabled baby, which means not having to be a lifelong parent to a disabled person. The test will allow that choice to be made earlier - or of course not to be made.

We will always have abortion. What the test means is that if the woman decides to abort, she can do it earlier. It is not possible to guarantee a conception without Downs. So, uncomfortable as it may be, it the mother does not want to bring up a child with Downs, there is only one answer.

and yes, we certainly need more help for those who are disabled or are parents to them, regardless of whether they knew before birth. Tax rises needed for this and many other things.

Maybe Phillips and SPUC would like to divert their energies in that direction.

You will never know the pain of carrying a child that essentially is dying before they have even been born. My daughter was diagnosed with DS at 17 weeks gestation. My first, much loved, much wanted baby. She was being flooded from the inside out. Every major organ was surrounded by water and she had a large cyst growing on the back of her head. I chose to terminate. To end her suffering before it began. I would do it over and over again. That is a mother's love. You may not agree, but then again you aren't carrying the child, you aren't the one that received the heart breaking news so how on earth could you say what you would do. Count yourself lucky that you have never had to make such a heartbreaking, gut wrenching, life changing decision like that.

Screening equips families to prepare themselves, educate themselves make intelligent , informed decisions on what is essentially the right decision for them. How can a TV celebrity that has a high functioning DS child make a unbiased documentary about DS?! I pray the NHS continue to provide prenatal screening so that families can make informed decisions that are best for their child and families.

Ik4y I am sorry for your loss but your situation was very different to the one that is being debated.

Of course you did what you did out of love (without a doubt I would do the same) However this is not referring to children who won't live.
Its children who will live with DS.

I think Sally Phillips point of view as a mother of a child with mild DS has some merit and therein lies the issue - there is no way of knowing how severe DS will be at the time of screening.

merrygoround51 that is also my point that I did not go into, who knows, maybe my daughter could have survived. I followed the advice of my Drs. She could have grown up to be a high functioning DS adult. But guess I'll never know. Instead I 'aborted' her because of all the outdated information the NHS give.

Actually what I did was consider the best and worst case scenario, I researched and questioned things and educated myself. I consider her life, imagine every step of it. The reason why DS is mentioned so much rather than the other screened Trisomies is because they are incompatible with life. A child with Edwards or Patau is unlikely to live at all whereas of course DS is compatible with life, in many cases - yet what is forgotten is the long list of health complications that usually (not always as we keep hearing) accompany DS.

I would have made the same decision regardless of the other health complications. Because that is what was right for me and my family.

I don't think anyone is suggesting it's helpful to describe all people with DS as happy and childlike - however I do take exception to labelling looking after an adult with DS burdensome. It may be to some, but it's a fucking preposterous assumption to make that generalisation!

I have had long conversations with 2 people (one my aunt, one my godmother) who are very close to me about their adult children with DS and they would never, in a million years describe looking after them as burdensome. My godmother has subsequently died and her daughter is married and living an extremely fulfilling semi-independent life, so the argument about the bleakness of a child with DS outliving their parents isn't universally true either.

I am not pretending that it's always a happy picture, but equally it isn't always awful.

Again, I truly hope none of my 5 friends with children who have DS have to read this thread.

By the way, my step-cousin with DS has many more problems and his mother still wouldn't call looking after him burdensome.

I watched it today and found it very interesting, yes she was very emotional but it's a subject close to her heart! Enjoyed it and thought she did a great job.

I found it very emotional and some people think it was biased but of course it was, imagine if your child was deemed as not suitable for this life. Anyway it's time the other side of the story was told. Well done Sally from a fellow Mum of a different child.

But there are carers who have buckled.

I thought it was OK that it was one-sided, it was obvious it was a personal piece. And a campaign to get better information to prospective parents must be a good thing. I think the problem is Sally cannot help (understandably) but see every negative view as a view against her son. I heard her on the radio and she said she believed in the right of women to choose, but clearly for her she really doesn't feel that people have the right to abort for Downs. And that isn't what the right to choose means.

means "but you can't abort for Downs"

Gah, leaned on keyboard. Delete bottom sentence.