If this has been posted before, well, sorry. Just lock this if it has already been discussed.

This came to my attention today. It is so very tragic, it actually made me want to cry.

The full article is here.

Basically, a little girl over in the States has been born with 30-40% of her facial bones missing. She has no upper jaw, no cheek bones, no eye sockets, and she's missing the corner of her ear. She suffers from a disease called Treacher Collins Syndrome. Doctors say it's the worst case they've ever seen.

The point I want to raise, is that should this little girl have to live such a life? She is fed through her stomach, and I believe she has a trachi to breathe. This is not to mention the appalling treatment she will get from other kids. She may not even survive the 30+ operations she will need to re-construct her face. How loving is it to hang on to your sick child, when their quality of life will be so poor? Now, I recognise that the parents of this poor little girl are obviously very loving, and naturally are not keeping her on this mortal coil for their own selfish wants. I argue that in severe birth defects such as this, and degenerative diseases such as Motor Neurone Disease euthanasia is fully justified. The key difficulty is making a dicision as to whether a child should live or die, when said child will not have an inkling as to what is going on, or even what is wrong with them.

Anyway, enough of me. Oh, btw, there is a video on the aforementioned site, but I have not had opportunity to watch it (something to do with Firefox) so I cannot warn you as to whether it is disturbing or upsetting. However, I imagine it may well be both.

Oh, and please, keep this sensitive. I've seen this posted on other forum's, and other sick people posting "I don't know how she can face living." None of that.

Well, I think a good point to mention is that medical science has advanced enough so that they are able to reconstruct her face. True, she may have to have many surgeries, but now a days, at least we're able to do it.

Also it should be taken into account that she's only two and they've been reconstructing her face for, I assume, a decent amount of time. While this can't take away from possible teasing and stares that she might get, it changes its impact somewhat. For now, I imagine she has no real recollection of how she looks to others, and hopefully those surgeries can happen before she has full recognition. The important part, however, is that her parents do love her unconditionally, and it is through that love that she'll hopefuly be able to cope with whatever impact this has on her life.

How exactly do you propose the parents tell their beloved daughter that they want to kill her, in the hyperthetical situation that that is what they decided to do?

I don't believe euthanasia is ever justified when it comes to a child. Children don't know what life is really about yet, because they haven't lived out anything more than their home lives. If they are given love, support, and care from a family who truly wants them, while their existence may seem like the worst form of hell to someone else, they cherish what they have, and deal with what they don't.

She's two years old. Treacher Collins *can* be diagnosed during pregnancy, if I remember right. If it were a matter of her parents choosing to end the pregnancy before the 1st trimester ended, I can't say I'd agree, but I wouldn't fault them for it and I wouldn't dare try to take their freedom of choosing that option away. To me, it becomes something completely different when the child is actually here though- when the child has been born. It becomes murder..

According to the video (which is a bit graphic, the poor girl's face is very disfigured), they did see that there were some problems with Juliana's face during the pregnancy, but the doctors guessed that it was just a cleft lip at worst. It wasn't until after she was born that they saw the full extent of the damage.

Also it ought to be noted that the parents have no intention of euthanizing their baby girl, so this discussion is completely hypothetical. There's still hope for them that after the 30+ more operations to reconstruct her skull that she may be able to live in a bit more normal of a fashion. She seems to be friendly, alert, and bright for a 2-year-old and doubtless will have opportunities to make some contribution to the world.

I saw that they thought she had a cleft lip. There have been at least a couple of moms who have found out their babies had treacher collins while they were in the early stages of development during the time I worked in the nursery.

I'm glad the parents seem so loving and supportive. It's refreshing to see that, after seeing all the other crap that goes on.

Although, yes, it is marvellous what medicine can do (especially in plastic surgery) but for such a small girl, the time ahead is going to be terribly traumatic. Bear in mind that she is two now, and has had 14 (I think) operations already. That means they're going to be operating on her for roughly the next four years. What is more, in that period, she will likely experience bullying from some children. I'm not saying that the couple should allow their child to die now, but perhaps, in my opinion, it would have been the loving thing to do when she was born.

She is a living and breathing child now, so theres nothing for it but to continue the treatments.

While in the womb/ after birth then euthenasia could have been an option. I assume she wouldn't have survived without constant attention/life support.

However at the moment she has lived a while. She has her own experiences and life. You can not just take that away without it being murder.

It's sad, but you can not go around killing people just because they look different, and people are kept alive with much more life-threatening problems. She may have a combination of both, but I don't think it justifies it.

I was never suggesting that she should be let to die because she 'looks different'.

Ack. I wasn't implying that you did. I just meant it shouldn't realy be an issue where people with much worse conditions are kept alive with few reservations.

Theres a hope the child can have a normal (or close enough) life, and considering how old she is now the alternative is rather distateful to me.

I realy do not envy the parents having to make the choice when she was born.

I don't see how anyone can justify euthanasia just after birth - what a waste!!!

Giving birth isn't all the mother, you know. The child works just as hard to bring itself into this world and then to club the poor thing like a seal the minute that it emerges just because those first few breaths were almost impossible and it needed help and what really is the point because the poor thing is going to blatently have a miserable life.

*takes a deep breath*

I'm not suggesting that's what you were saying, Calantyr, it's just a mentality that I dispise with every fibre of my being.

This child has every opportunity to live a long, fruitful and entirely normal life. The first few years are going to be incredibly hard but she is alive. She's two years old now, she's come this far and she can go a hell of a lot further.

The parents actions and that fact that she is still alive proves that euthanasia would have been the wrong choice in this case.

I don't like it either. I think everone is worthy of the chance of life. But it is the duty of the parent to assess and decide whether or not the baby will have a completely unlivable life, or otherwise. Like it or not, the child is their responsibility. On top of that, children are considered the parents PROPERTY until they reach 18 (at least in this country).

If it was me, I would keep the child. I would help it and do everything that I could for it. However, for others this is simply not an option. Either they are unwilling to put that amount of time and effort into it, or they are simply incapable. It's also a question of what would cause the least harm. Would the child like having to live a life of pain and suffering until they are capable of choosing for themselves? Would it be better if they don't? Questions like this are so much easier to answer if the parties involved believe in an afterlife, or some kind of soul reincarnation.

But then again, I don't plan on having children... nor would anyone want to have them with me! So my opinion is probably pretty worthless.

I remember watching a film about a guy that had this weird skin condition where he grew too much skin. by his late 20s, his fingers has all fused together, any actvity more than very slow movements caused more of his skin to come off. He also couldn't walk, and the prognosis was that he would die of skin cancer.

He looked like his skin was barely hanging off his bones... and every morning of his life and every evening everytime he removed his clothes, he went through the excruxiating ordeal of having the top layer of his skin removed. (it was on in the UK ealier this year).

He had this condition from birth, and has lived his whole life that way.
The reason i brought it up is because he seemed one of the most optimist upbeat people I'd ever seen. His family may have been the ones that looked after him, due to his dependance upon them. But he seemed to brighten up their lives and days so much.

I remember thinking when I watched it, "I wish i had known this guy" (he died before the program was ever aired), So much stuff he said struck a chord, and he seemed so sure of himself.. I mean sure he had some pretty shitty days, probably shitty weeks and months too. But at the end of the day we all do, it's just his good days made me feel a little guilty for ever feeling bad about myself. It was like "if that guy can be so happy with his life with all that.. why do I ever have bad days?".

I mean.. if a babies aware, and can feel and touch, and responds, then I think it's unfair to assume they will be unhappy. Having shitty times doesn't nessecarily mean you will for a fact have a life of pain. Some perfectly healthy normal people seem to me.. so much more unhappy than the guy in the story I saw.

Ok that's me done

I have an 18 month old son, so I'm very aware of what the responsibility is. I think that's probably why I feel so strongly on the subject.

I don't think they should take her life. She's already survived a fair amount of time, and because they have the ability to attempt to reconstruct her face, I don't think euthanasia is really necessary. The parents should decide, however, what they believe should be done.

This is a very very sad story, and I feel so badly for the little girl, but I don't think that she would probably want to die reguardless of how she looks. My friend has a 2 year old and he can talk and play and he has a complete little personality. You really can't euthenize a two year old. If she was say on life support I would say pull it as I always do, but if she is alive and living, let her live. I really hope that after coming out of these surgeries and all that she will be able to live a full and happy life.

Well, obviously one would most likely not want to euthanize the two year old. But euthanasia could have been a choice at birth. However, it's nice to see that she is able to live on and may be able to lead a mostly normal life.