Do you think this couple is unreasonable?

[corgiology]

www.itv.com/thismorning/hot-topics/branded-cruel-for-having-our-daughter-alice-treacher-collins

[quitedisgusted]

My child is sporty, 'healthy' funny and full of life yet she takes numourous medications and has various treatments which she takes in her stride. If she'd been 'screened' she wouldn't be here which doesn't bare thinking about.
I'm sorry if I'm on the defensive but as much as she endures differential regimes to her peers - she doesn't suffer and is in no pain - I love her and I'm so pleased she's here - as is she! ...she's having a ball!

[Iliveinalighthousewiththeghost]

No not at all. None of like to think about this but every couple takes a chance when deciding to have children that something could go wrong, so why should this couple who are clearly wonderful parents have denied themselves that chance. They ate undoubtedly wonderful parents, very much in love
And that little bungle of joy and fun is clearly loved and wanted.
What's unreasonable about thT.

[SaucyJack]

I've just Googled Treacher-Collins, and from looking at the "worst" case scenarios then for me, it would be something I would prefer to avoid given the choice.

[quitedisgusted]

My child doesn't have TC but a different condition - I didn't have a choice as circumstances permitted screening.
Everyone's lives aren't laid bare so no one knows the full in and outs.
Thistime it was spinsters comment at 19.35 regarding 'reject', I didn't say everyone was stating it.
There's always that grey area between the white and black ...I guess you never know how you feel until you're in that exact position yourself.

[TowerRavenSeven]

I agree Saucy Jack.

[Hestheone]

If I was already pregnant and one of the test came back saying baby had downs,cleft palate,limbs missing etc I would not abort as the baby is there iyswim but when it's Ivf and before there's a baby you can take out eggs that have problems,why on earth wouldn't you.

Since having my dc's it's been discovered that we are genetically disposed to depression,2 siblings diagnosed as bipolar,I had suicidal PND,mothers birth father and sister both committed suicide,cousin with PND jumped off block flats and survived,now paralyzed,more bipolar in birth family etc.if I had known this before having children I probably would have stayed childless.
The thought that my dc's could grow up to have a mental illness is awful

[bostonkremekrazy]

quitedisgusted - thats the difference isn't it, my children do suffer and are in pain, i'm their mum and i have to watch and love them through that. it's a preventable screenable genetic condition. as is TC.
if that couple whilst having IVF anyway screened the embryos they could have chosen a life without the pain/suffering of TC for their would have/could have baby.

[quitedisgusted]

I was told my child would have a life of pain and an early death when she was born but she's defeating the odds.
I do understand your point Boston and my heart honestly does go out to you
All I'm trying to say though is that its nots that clean cut with every condition as I feel I'm being judged for having a child with a genetic condition when people don't know the true facts of how it came about.
That is all....

[Iliveinalighthousewiththeghost]

Now don't get me wrong if God came to me this second and said. Tonight Ghost/lighthouse/ilive you will conceive but your baby will have no quality of life. Will be in constant pain. They will exist not live.
Then I fully believe it would be selfish of me to bring the baby into world.
So it is horses for courses. Like everything in life,

[LadyCuntingtonThe3rd]

Cruel and selfish.

[jacks11]

If I had a risk of TC, or another serious genetic condition, I would choose to screen through PIGD if this was possible (as would have been the case in this example) as bringing a child into this world with these types of conditions is not something I think is fair, personally.

If it was a natural conception, and I found out the baby was going to have one of these conditions, I am as certain as I can be that I would not continue with the pregnancy. If I knew I was a carrier, and there was no way to test for these conditions, then I would probably choose not to have children.

[Mermaidhair]

I don't think it is for me to judge their decision. Me personally in the same situation, I would have had genetic testing done. I would not like to take such a chance.

[sunflower49]

I don't believe people with disabilities should be of a lesser value than anybody else in society.

However society DOES think this , largely.

I would not actively choose to raise a disabled child on purpose.

If I could choose to NOT on purpose raise a disabled child, I would make that choice and make sure I wouldn't.

Therefore yes, I think this couple were unreasonable.

[CloserToFiftyThanTwenty]

I feel incredibly fortunate not to have had this decision to make

[MrsMcColl]

Boston I completely agree with you. My DD has so much to deal with - profound disability plus several related life-threatening conditions associated with her genetic mutation. I love her with all my heart, but if we'd been able to choose a child without her condition, that's what we'd have chosen.

[GlitterNails]

I look at this from a different side. I have a genetic condition that is a heritable one. Any children I have will have a 50% chance of having it, and some studies say a higher percentage.

My parents had no idea they were passing anything on. It's likely one side of my family has it at a low-level, and I got it full force.

There is a spectrum with the condition, and I have it quite badly.

I have chosen not to have children. In many cases where people have had children - I've noticed they are usually (not always of course) at the lower end of the spectrum, so their symptoms aren't quite as severe. However - the level you have it, won't always be the level your child has it. They could be the same, better, or worse. You just don't know.

The one main thing that has made this decision for me is the pain this condition brings. For me it's constant, all consuming and in every part of the body. That to me, personally, makes it differerent from many other non-painful conditions as it's about quality of life.

I've wanted children for as long as I can remember. I can't imagine having a child and them asking me why I chose for them to have constant pain. I would feel awful, and would feel like I condemned them to a life like mine.

They haven't found the gene yet, so I couldn't test the embryo unlike this couple who were lucky enough to have a choice. I find it strange they chose to go ahead when there is an option to avoid - one many people with genetic conditions would love to have.

[GlitterNails]

To me a lot of the struggle isn't with the person with a disability - but the world we live in. We live in a world where about 80% of my town centre is inaccessible to me in a wheelchair. A world where I've been discrimated against due to my disability at every work place I've been at. Where I had to go through two awful and horrendous tribunals where I felt like a criminal to receive the benefits I needed. Where I have to fight like hell for every scrap of help I'm given.

A world where disabled people are actively targeted in the media and by the government where that help could vanish at any point. A world where I have no specialist consultant as the NHS doesn't have the resources, so I feel like I've been left to rot. A world where people have the most awful attitudes towards people with disabilities.

Battling all that in itself is like a full time job energy wise.

[MrsMcColl]

Totally what GlitterNails says. I would have chosen to spare my family that, as well as choosing to spare my daughter the pain and struggle she lives with.

[TheAnalyst]

For those parents not to go through with this, the father would have had to think "On balance, has my life been worth living?" and then answer "No - I might as well not bother with this then", which is a ridiculous thing to expect him to believe.

[hibbledibble]

I don't think it is for anyone else to judge them, but I do find it hard to understand that they didn't go for PGD simply because it cost more and meant more travelling. Especially as there will be a lot of cost and travelling associated with having a child with additional needs.

[angelos02]

I do find it hard to understand that they didn't go for PGD simply because it cost more and meant more travelling. yy to this.

Some £'s and a bit of travelling is nothing to prevent a lifetime of suffering.

[TwerkingSpinster]

It all just feels like they wanted to present as being 'right on' and 'cool' about the condition. Like, its no big deal....I'm OK with it.....my life was worth it etc. But in reality, a poor baby faces a life of painful operations, bullying, disfigurement, just so the dad didnt have to be made to feel like his genes are rejects. Vanity. And I pity the baby. Why are they bragging about not screening? Its like they want praise.

[MaidOfStars]

For those parents not to go through with this, the father would have had to think "On balance, has my life been worth living?" and then answer "No - I might as well not bother with this then", which is a ridiculous thing to expect him to believe

I disagree. The father (and mother) made a far more active choice than that. They didn't choose between a life or nothing (which is what you propose). They chose between a healthy life or an unhealthy life. That's different, I think.

[MaidOfStars]

(To the poster upthread who pointed out issue with using words like "unhealthy", I completely accept and acknowledge your point; I'm using shorthand here).

[Aussiemum78]

If you googled my genetic condition you'd be of the impression I'm covered in lesions and suffering multiple cancers. I am probably also mentally retarded.

Despite the gene though, I'm relatively healthy and unaffected. No illness, very intelligent.

I'm certainly glad my parents didn't test and discard me! I think the world is better off with steven Hawkins too!

Genetic testing can't tell you the extent of a disability.