This poor baby was born without a face

Poor little girl... her own mother looks horrified.

heart breaking

This is a child who should not have been born. As you can tell I am not part of the religious right. Such a shame.

Oh Cj.. you said what was on my mind.
I am a new mother, I cant imagine being in that position. But the child cant breathe on her own, cant eat on her on. cant talk, cant hear, cant see.. without surgical intervention she woul dhave died. After surgican intervention.. she is living? But what kind of life? ( go ahead, bash me all you want.. but that is how I feel )
Im torn on this. Part of me wants to do the ' oh poor baby thing too. The BIGGER part of me wants to do the oh poor parents thing. This child will never see/hear what people say about her. How they look at her or thier reaction to her. Her disease is a shelter from those things. But as she lives, her parents will see all , hear all and feel all.
My heart goes out to them. What ahorrible decision to have to make.. Im sure at one time or another a Doc asked them if they wanted thier child;s life saved. As any paretn would, of course they said yes. Now they have to live with the heartbreak and the pain of our rude society. People will treat them so horribly because of thier daughters disfigurement. >sigh< I could almost cry.
This is just so sad.

Put it to sleep already.

Did it say she can't hear? Only the corner of one ear is missing, I thought? I'm sure with some training, she will be able to communicate through a laptop if she doesn't already make noises to respond to things.

I wish there was more info.

regardless of faith - you just slapped people with disabilities and birth-defects pretty hard = just one example Helen Keller - what has her contribution to society been?? compassion man

I'll stick to my original statement.

Someone on another forum who has a wife and son with Treacher-Collins said they are organizing a party for this little girl this week. After reconstructive surgeries, hopefully she will be able to live a productive life despite what her "outer" appearance and disabilities. This guy's wife on another forum became a teacher for honor students, and their son just graduated college. He thinks there is hope for her, so I have to think there is too.

Maybe, maybe not. I think they are extremely brave and the little girl will have a hard life full of struggles. My deepest admiration. However I will also defend the right to choose till my last breath. Not every parent would be willing/able to do this, and i have to lean towards cj's and shewolf's opinion. maybe if i knew more about what her possibilities are, i would think differently. we don't know if she can hear and whether her brain is deformed as well, for starters.

I am an RN. I can tell by the Xray that the collapse around her ear canal that she wont hear.
Sorry.. i should not jump to the conclusion that things like that are obvious. They are to me. I will explain.

If you look at the xray, the temporal lobes on BOTH sides of her head actually have a ' cave in ' effect. Where they cave in, is where all of our hearing abilities are. The ear drum and all the other essential cartilidge and muscle can not form in such a small area. The circumfrence of the ear drum is .4 of an inch. There isnt enough room. The temporal lobe ( in her xray) also shows no place for the area we call the inner ear. That is where we get our balance and truthfully some of our eye sight. If her eye sight is gone, then it leaves me to conclude that her hearing is gone too. I come to that conclusion because of the shape of her lobes. Not from any information I have read.
That is just my speculation. I will say that I believe I am correct.. but I am not a doc. So she MAY have hearing.. I doubt it.

Did they show The Boy David in the US?

link to story

he was a small boy, abandoned by his family in South America - he had just a large hole in his face where his nose and mouth should be - most of his face was just this giant hole as a result of a severe infection.

A Scottish surgeon undertook the task of rebuilding his face and he and his wife eventually adopted David - he's grown up to be a really nice person with a fulfilled life.

I'm going to have to side with husker on this one.

http://www.treachercollins.org/main.html

Ronald McDonald house called me recently to arrange a photo session for a young girl who was staying there during her surgery. Her face and hands had been burned off when she was a toddler. She's 18 now and has undergone countless surgeries to approach "normal" looks.

She is Russian but she spoke flawless english and about four other languages.

She was really quite amazing.

Our surface is nothing but a shell.

hmm.. actually.. the more I look at the x ray, the more I may want to stick my foot in my mouth.
on her left side, there does seem to be some stable bone structure that COULD very easily hold the fluids necessary for hearing.
hmm..
Thank goodness im no doc. hehe

Boy David's story is different. he can hear/see/ and talk now. none of these senses can be restored in the little girl. i am not saying her parents made the wrong choice, quite the opposite, all the power to them. but it is still a choice.

Nowadays they have devices where you can just think something, and it comes out into words ....so now that the choice has been made, hopefully she is able to take advantage of all that science/technology has to offer.

I can already tell she's quite loved.

Definitely interested in learning more. The link says:



That indicates to me that whether someone else has the same syndrome doesn't matter that much, really -- this girl has a very, very bad case of it, and the degree might make all the difference. There are all kinds of diseases/ syndromes that can be completely different in effect according to degree.

If it's really a matter of just her face and reconstructing it, whatever.

It doesn't say how her brain is impacted. She seems to be holding her head up in the picture, that's something.

I have been faced with that choice twice. It isnt easy. Nuff said. ;-)
I agree with you dag.

More info on Treacher Collins (no claims as to veracity):

http://www.treachercollins.org/main.html