To think a test for downs that is nearly 100% accurate will not result in more terminations

[PlayOnWurtz]

I'm getting increasingly annoyed with Sally Philips at the moment and her insistence testing for downs syndrome is a negative thing and that living with someone with downs syndrome is a wholly positive experience.

Whatever happened to choice? Who is she to lay the guilt trip on people? Why is it seen as shameful to say "I would not be able to raise a person with significant health and learning disabilities" and seen as a negative decision made on a whim rather than a decision made with consideration and thought and heartache?

Whether people understand or not is by the by. You make that choice for your child and let us make the choices for ours.

I haven't read the whole thread so may be repeating others but I find this a bit bizarre.

Very few people do not choose to attend scans, and the scans we have are for anomalies, not just to see the baby/ find out the sex. If an anomaly is detected indicating Down's Syndrome then currently further invasive tests are offered that carry a risk of miscarriage.

The current amnio test is 99% accurate but with a risk of miscarriage, the new test is more than 99% (but not 100%) accurate with no risk. My interpretation is the new test does not take choice away any more than the amnio; but it does provide a no risk 99+% accurate result which facilitates choice.

"I wouldn't remove my girls Down's syndrome from her. She doesn't suffer from having Down's syndrome, its not an illness or an affliction its who she is. Your comment drove home to me how little people understand about Down's syndrome. I want to weep."

I think you need to be more precise what you want to remove. Do you want to ensure that your child with Down's has no heart or digestive problems? Things like grommets or hearing aids make life better and so do glasses. The thing that scares people the most is intellectual disability. Physio can help the child with Down's.

Certain aspects of Down's syndrome can cause suffering for the person. It's not just looking a little different and having learning difficulties.

"I haven't seen any posts that I thought were bigoted or disablist - just some people describing their first-hand experience of adults with Down syndrome and other intellectual disabilities."

They were making sweeping statements, incorrect generalisations and putting value judgements on them.

I've only come across rude and loud . I'm just describing my first hand experience of them. Is that ok?

The fact that you don't think comments about "sex crimes and pests" are abhorrent says an awful lot about you.

You need to read the previous post I think. I'm a bit confused.

My daughter doesn't suffer at all from having Down's syndrome. She does suffer from outdated opinions and ignorance from people who have no idea what having Down's syndrome means in 2016...

She has a learning difficulty, but so do 27% of her school friends. Interestingly, the 27% of the kids in her school that require "extra support" are 90% due to poor parenting.

I guess having a children comes with responsibility and risk?

Wantage I'm sorry to hear your daughter suffers from people's opinions.

I am still in favour of people having the right to terminate a pregnancy should they wish to.

Aren't you?

jessica29054

YES!!!

I recently interacted with a lady who sought me out to talk about Down's syndrome. I was honest and factual and after a long dialogue she messaged to tell me she had chosen to go on and terminate. I was heartbroken of course, but she did what I would love EVERY person to do... research, fact find, get a true and honest account of life with a child with a learning difficulty. That woman made an informed choice. She will never regret her choice because she went to great lengths to make sure it was right for her.

The women who regret it their decision to terminate are the ones who were not given the opportunity to explore all the facts.

Okay, so then we all agree. This is largely what bemuses me - the argument seems to get circular very quickly.

There is no stain on you in that you have a child with Down's syndrome but this is not a decision for everybody.

StatisticallyChallenged

So basically you are saying that society will fuck her up.

Her Down's syndrome won't hurt her, other people will.

As for dementia - my best friend mum is in the final stages and it started at 40. Life.

My mum died because a paramedic misdiagnosed a perfectly healthy 63 year old and she died.

My husband's father died of cancer at the age of 43.

My other best friends son is 11 and is gay and is being relentlessly beaten up and bullied.

Life sucks mostly, and all we can do is make the best of it!

This is what Sally is trying to achieve... read the objectives and join if you think its the right way for us to go x

www.thunderclap.it/projects/47907-a-world-with-down-s-syndrome

There is still a choice to have the test woman won't be forced to and the uptake for the current Down syndrome screening isn't 100%. Not all woman with a positive result will terminate either.
I think it's a good thing as will stop woman having invasive tests and risking the pregnancy when the baby is normal.

Absolutely this ^ Amnio is a nasty fucker of a test and if we can screen far more safely and accurately why wouldn't we?

Personally I would not abort BUT I respect the choice of anyone who does it is absolutely ZERO business of mine what another woman does with HER body and HER baby.

I also strongly agree that we need FAR more support in place for people with disabilities, many are being failed accross the country right now and it's an utter disgrace. Less worrying about babies who may or may not have SEND and worry about actually helping the ones who are children and adults being failed right now.

Erm, no, that's not even remotely what I said. You are intentionally being aggressive and antagonistic, and you have a talent for selective reading, or just making stuff up. One of the examples I gave was that " she reaches her teenage years and the social differences become apparent and make her emotionally distressed", not saying that society would fuck her up.

Support and help is key. Support a woman in her decision making process if she gets a result that shows her child likely has downs. Support children born with downs. Support their families.

The world would be a far better place if people were just simply supported instead of judged.

Wantage - Surely your daughter is special
and wonderful because of who she is? Her character, her personality and the people around her who have shaped her? She's not special because she has chromosome abnormality? Surely that's doesn't define who she is? Lots of people have the same chromosome abnormality but they aren't her?

Zeeandra

Nailed it :-)

Sorry Effic, I have obviously missed something...
All 3 of my girls are amazing and special and wonderful! I am sorry if focusing on my girl with Down's syndrome has made it seem like I think she is amazing because she has Down's syndrome... she is amazing because she is her... My other two are are just as amazing! Seems these online chats end up coming across all wrong and I wish I could bore you all with the realities of my life but I suspect you have better things to do than listen to me rabbit on!!

Wantage: I'm sure the realities of your life with three girls is anything other than boring!! I speak as a mum of an only who looks in in frank disbelief and admiration at those who have more than 1!!
The point I was trying to make (clearly not very well) is that I find it infuriating when people are characterised mainly by their disability because it's usually the least important thing about them! Without being too identifying, due to my mum's job/hobby call it what you will, I've been around disabled children and adults my whole life. Some are or have been my best friends, some great fun to have an occasional drink with, some ok to talk to, some a but 'meh' and a few absolute hateful arses!! Because they are people first and their disability a very distant second. I absolutely don't believe that screening is trying to do anything than eradicate a genetic abnormality in foetus - clumps of cells that are not a someone. Once they are a someone, then each one is unique and special whether with or without a disability. That's my clumsy throughout point of view I think. Because the issue is complex x

Gah - loads of typos but I hope readable!! Thought out not throughout!

I would have been very keen on a non invasive test as I ended up having an amino and a near miscarriage with my little boy.

I knew I didn't want to bring a DS baby in to the world if I could do anything to stop that I would. Not entirely for me, but I was aware his sisters would have been taking the brunt of any care needed years down the line. I already had one born with sn, and quite frankly I don't wish it on my worst enemy. I didn't find it rewarding as one is supposed to, but a gruelling round if hospital visits and little sleep.

If anything I find the positive talk about how rewarding and wonderful children with special needs are rather inaccurate.

I think the test is a good idea. Women should be able to make the choice they feel best for them. If there are issues with support for either choice being in place then that's what should be campaigned for.

I'm currently pregnant and have had a mmc and have been told by several prolife (though they call themselves prochoice) friends that they're surprised I support the right to chose. I do support that right.

The lady talking seems to be of the mind that some abortions are more 'moral' than others and because she has her opinions on which they are she is very anti choice the ones which aren't. I can get that she's biased and it's very emotive for her but that doesn't mean that her choice is the correct one for everyone . There is no correct choice except for what's best for the ones choosing.

Dh and I had the risk calculations done and a fraught 20 weeks waiting for the anomaly scan because we wouldn't risk another mc. We knew we'd keep the baby regardless but the reassurance would have really helped, especially with my anxiety.

Crashdoll - if you think there are any disablist posts, report them and MNHQ will delete them, or quote to the comments directly to ask the people who wrote them to elaborate further - I read it as people describing SOME individuals they had met, not all.

I did report, I did challenge. HTH.

I have just watched this on catch up. Sally is a marvellous presenter and her son looks lovely. BUT it was very one sided. All kids with DS looked high functioning - where we the families at the other end of the condition who are really struggling with a child with DS. Additionally this new test will end the 1% of healthy children who are miscarrried during the amino. This was not mentioned either. I am totally pro choice and just because I would choose to abort does not mean I don't respect people who do continue with their pregnancies. I do think there could be better information given to prospective parents of a DS child before making this choice, but it should be balanced, and not Sally Phillips "everything is wonderful". In this day and age we have more resource than ever to help us make these choices, and perhaps this is why the birth rate had gone down. Who knows - but at the end of the day no one should take a woman's right to choose away from her.

I have mixed feelings on this. I have been through testing and 'bad' results in 2 pregnancies.

One thing I have learned is that it is easy to say 'I would never' when something is hypothetical. But if you were told you baby definately HAS something it is a dirrerent matter.

It's not true that parents terminate as they want a perfect baby (no such thing) or that they are selfish. The vast majority would say they do it as they love the baby and don't want it to suffer/life is hard enough etc. Not necessarily for downs but for any number of awful problems.

Some people are forced into an amino. For example they go for a scan and baby has hydrops (fatal withoit drainage) and the doctors won't treat unless the baby has normal karyotype (because it would be fruitless).

I think the best way of peiple feeling they could cope with a child with severe disability is by making sure society provides extensive support, financial and practical. And by society being more inclusive. Not by trying to take choices away. As has been said, the documentary was very biased and she didn't mention her many advantages such as being well off and having nannies and family help. Totally different world.

Am example that stuck in my head was of a lady who had a terminating of a baby with downs. She had an older child with downs and didn't think she could cope and though it would be unfair on the existing child. This person had knowledge of downs (her own child) and certainly loved her older child and would with the baby but felt it was impossible. That example dismisses many arguments made.

I also don't understand how people are up in arms about abortion at 20 weeks for abnormality yet fine about people aborting for.financial, career etc at the same stage.

Later abortion after 24 weeks is very rare indeed so can't really be part of the argument.

A good article I read re this programme mentioned that SP was in tears when with the lady who had terminated but where we're the lady's tears for being judged or her experience etc.

I think it's wrong just to show one sided emotive programme. Should have also showed someone struggling to access services or at the severe end. It just makes things harder for women in such a difficult situation.