Do you think this couple is unreasonable?

[corgiology]

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

[KingJoffreyFanciesDarylDixon]

No. They love their child.

[Greythorne]

No

[twirlypoo]

Nope, Not even a smidgen. I would imagine they gave more thought and consideration to having a child then most people do in fact!

[ShaynePunim]

No.

[JennyOnTheBlocks]

not U in the slightest

[grannytomine]

No, she looks lke a lovely little girl.

[balletnotlacrosse]

There are so many inadequate, dysfunctional and immature people who have children and then drag them up, neglect them or actually abuse them.
But a stable couple who love their child and want to do their best for her are being called cruel or irresponsible?

[MaidOfStars]

I work in medical genetics/dev bio/craniofacial development (and, in fact, share a lab with one of the key people in Treacher Collins research). I have just checked and it is one of the conditions that permits PIGD (IVF plus genetic diagnosis to screen embryos for particular genetic disorders), according to the HFEA website.

I am torn on this and am therefore marking place to keep up with the proffered opinions.

[firesidechat]

Not cruel.

Both of my parents are disabled and my mums eye disease is genetic, so here was a chance of me inheriting it. It didn't stop them having their three children or me having my children. None of us have the disease, but even if we did I would still feel glad to be alive and happy that "risks" were taken.

[Kewcumber]

I remember Simon from Embarassing Bodies some years ago. They all look very happy and their little girl is very cute.

[Kewcumber]

Maid they gave the reasons on the programme why they decided against PGD. I don't think its up to strangers to judge their decisions unless it is patently obviously seriously detrimental to the child.

Otherwise where do you draw the line - blindness, deafness, big noses. Would someone very ugly be considered selfish for having a child?

Her Dad understands the condition better than us.

[twirlypoo]

Maid I'm so sorry to sound thick, but what's that mean? Bit embarrassed to ask that, sorry!

[Kewcumber]

Pre implantation genetic diagnosis (or something!) - they take a sample of each embryo, screen for the gene and only reimplant those which don;t have it.

They had 18 months of genetic counselling - they didn't wander into it blithely.

[GloGirl]

My instinct disagrees with the posters on this thread.

I've just read a bit more about this couple, they actually did have IVF and chose not to get screened for TCS because it cost more.

I'm sorry whilst I don't think they're cruel awful horrible people, I don't think what they did was right.

I would never voice that to them, but this is an anonymous message board and I just wanted to add a different view.

[twirlypoo]

Thanks Kew

[GloGirl]

*Crossed posts, one thing I read said cost was a factor in not screening. Perhaps there were other reasons to, but I am still of the same opinion.

[fiveacres]

Inclined to agree with Glo.

It wouldn't personally have been for me.

[angelos02]

I think it is cruel as all of that suffering could have been prevented.

[whois]

For me, if I was having IVF anyway in their position then I would have certainly screened for Treacher Collins Syndrome and I do actually think its cruel to bring a child into the world knowing they have a 50% chance of having TCS when it could have easily been avoided. I can't think of many people who would choose this for themselves.

[MaidOfStars]

Maid they gave the reasons on the programme why they decided against PGD. I don't think its up to strangers to judge their decisions unless it is patently obviously seriously detrimental to the child

Treacher Collins can be seriously detrimental and disabling to the child. Devastatingly so. For me, it has always been the most emotionally difficult craniofacial disorder to process.

It's very tough to see "mild" cases (as this family present) and argue against "It's not unreasonable/cruel". The problem comes with how variable it can manifest within families - a mildly-affected parent can have a severely-affected child. Even mildly-affected people have multiple, extensive operations ahead of them. Severely-affected patients, if they survive, have such disabilities that are so utterly heart-rending to read about that I can't help but wonder why people wouldn't pre-screen.

[OTheHugeManatee]

All children are precious once they arrive. But they did IVF, had the option to screen for this and didn't do it.

[ThisTimeIAmMagic]

I think their decision not to screen their child was cruel. I have no doubt they love her but they could have spared her considerable suffering. I can't understand why they wouldn't take the screening and personally I think it is unethical to have allowed them to make this decision for their child. She is the one living with the condition.

[Kewcumber]

I think it is unethical to have allowed them to make this decision for their child.

So you think couples who have an inherited illness should be forcably sterilised?

Ignore for the moment that they had IVF. If they didn't need IVF would that still be cruel and unreasonable?

[AdeleDazeem]

I think if you have a genetic disorder then you might be quite insulted at the opinion that you would be selfish to have a child and potentially pass the disorder onto them. You might feel like people are implying that you should not have been born.

I'm sure some people with a genetic disorder do feel that their condition is so bad that they don't want to risk passing it on but other people must feel that their condition is manageable or for whatever other reason it's something that can be lived with.