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-   -   Juliana was born without a face (http://forum.tatysite.net/showthread.php?t=8304)

QueenBee 23-12-2004 03:28

Juliana was born without a face
 
Wow... this really shocked me. Watch the video.

http://www.firstcoastnews.com/news/l...?storyid=28372

haku 23-12-2004 16:02

Well, i couldn't see the video because it won't work on my Mac, stupid Microsoft :bebebe: :rolleyes:

Anyway... What's shocking is that this major defect was not detected early in the pregnancy, how can you miss that the fetus is lacking half its skull?!? This pregnancy should have been ended in the first weeks, this girl is going to have a horrible life.

belissa 23-12-2004 16:31

OMG, poor little girl...It's really terrible and shoking!

denial 23-12-2004 19:34

when I saw that video .. I was oh God! .. and then I start to think thats okay...God knows and God will take care of her .. she got a loving parents .. good medical attention and the whole US is there to donate money.. she must be there for reason...

Then I showed the video to my gf .. and she cried ... :none:

QueenBee 23-12-2004 20:15

Quote:

This pregnancy should have been ended in the first weeks, this girl is going to have a horrible life.
I think so too... I never understood how people with such diseases could lead normal lives. I don't think I would be able to handle it emotionally. Maybe you just get used to living with it when you haven't lived in any other way. :/

forre 23-12-2004 23:34

In this particular case, the plastic surgery will help her more than any God. The girl is lucky enough to have a loving family, so her starting conditions are not that bad. It's not only about the appearance but she has to use alternative ways for breathing and taking food too. Well, I hope that the doctors will help her.

QueenBee 24-12-2004 00:43

Screenshots
 
Screenshots for those who can't watch the video:

This is what she looks like
With her dad
Being fed (through her stomach)
After surgery
Baby monitor

:none: I'm speechless.

spyretto 24-12-2004 09:10

She must be there for a reason? oh common, denial...

Anyway, what can you say about that? I concur to what forre has said. I gather she wont be able to speak?

Kate 24-12-2004 09:12

Poor girl... if she survives she'll become just an interesting, rare medical case. :hmmm: I bet in a few years we'll see headlines about some doctor implanting artificial bones into her face or something...

thegurgi 24-12-2004 09:58

well, that's life for you. This didn't really shock me, i've seen it before, i actually have, not nearly as bad as that... I'll just let you all know that sometimes the adjustment for life in our society like that, while hard can be made confortable and i'm sure she'll be able to talk in the future with further medical help at least. I have complete faith in the orthopedic and pediatric doctors she's in the hands of ... and just don't... ... "Don't" is the word i'm gonna say, in this case don't think about what kind of life she'll have or anything, cause it will be her life and none of us have any real right to say what kind she'll have other than how she'll take it. I don't know if they've stated any mental disorders to go along with this... but in any case, i think this is one of those "Take it as it is and try not to ask too many insensitive questions" ... and especially don't gawk.

spyretto 24-12-2004 10:42

You're sure these things happen just like that? I mean is there a genetic issue further down the line or an environmental one, something that her parents did to have caused this?

I've no idea, you're the science students, so I presume you know better. :)

Kate 24-12-2004 11:10

spyretto, of course, the expression of a genetic trait (like the lack of face bone) may depend on environmental conditions the embryo develops in - but there must be such a trait in the genetic material of the embryo to begin with. I doubt that in a severe case like this environment played a big role, though. Unless the mother was subjected to a lot of harmful radiation or chemical influence (which would have been mentioned in the news). Usually microenvironemts in the womb effect insignificant traits like finger prints (for example, twins always have different finger prints despite identical DNA).

denial 24-12-2004 12:55

Quote:

Originally Posted by spyretto
She must be there for a reason? oh common, denial...

why? do you see her useless? sometimes we are forced of something that we thought there's no way out.. and as human being naturally ... we'll find way to survive .. find way to improve.. naturally a "fighter" .. even ignorance is part of process we could choose... and I am talking about medical science .. and of course .. God.

Quote:

Anyway, what can you say about that? I concur to what forre has said. I gather she wont be able to speak?
she wont able to speak and eat for now .. no upper jaw . how? ... I think she is 2 years old now.. still alive .. but who knows what next medical research will do to her .. I agree with Greg.. who is us to decide what life she will be face later... who is us to decide that she should be terminated when figured... who knows someday ..15 years from now ... they'll even make her looks like Mila Jovovich..

I didnt read or heard any mental disorder in article too .. she doesn't behave like one in the video .. even now its seem sad .. I'm glad of the parents she has .. .. its amazing... to me at least ..

QueenBee 24-12-2004 13:12

We aren't deciding what kind of a life she will have, we are just speculating about it. Of course we can't know for sure, and it's a bit stupid of us to judge like that, but that's just how people are. I think all of us are thinking SOMETHING about her future, either we are curious, feel sorry for her or think she will survive, so we are just explaining those thoughts.

We judge so many people otherwise, I don't see why this is so different.

Quote:

sometimes we are forced of something that we thought there's no way out.. and as human being naturally ... we'll find way to survive .. find way to improve.. naturally a "fighter" .. even ignorance is part of process we could choose... and I am talking about medical science
I guess you're right, denial. As I said, I think she just finds a way to live with it. Like a blind man finds a way to live without seeing and a deaf man finds one without hearing. Although, I don't think her life will be easy. She'll learn to live with it and get medical help but it still won't be easy. I'm such a person who just wouldn't get through something like that, but sure I admire her.

Kate 24-12-2004 13:41

Quote:

Originally Posted by QueenBee
I'm such a person who just wouldn't get through something like that, but sure I admire her.

It's harder to imagine yourself living without something you had all your life.

I remember this movie, "Love at first sight". It's about a young woman who fell in love with a blind man who lost his sight since he was 4 years old. She made it her mission to restore his sight, and when she finally achieved it, he wasn't happy at all. For example, he couldn't distinguish a real apple from a drawing of an apple. For him, sight was like an alien world. So when his illness took over and he lost his ability to see yet again, he told her that he is happy the way he is and that he hopes she will love him for what he is... it was sort of a happy end to the movie, I guess.

So, I was thinking, maybe if given a face after a lot of years living without one will be a negative thing for Juliana? Maybe for her gaining a face will be like for us loosing one? Like, she won't be used to feeling the bones inside her face, chewing will be wierd... And by the time the doctors will give her face bones, it'll probably be too late for her to learn to speeck, cuz she won't be able to control the muscle in her tongue. She probably won't be able to control her facial expressions either... So there are lots of complications in her case.

haku 24-12-2004 14:28

About the "god" issue...

This girl is not alive because of god, she's alive because of technology that can maintain her in artificial life, without technology this girl would have died within seconds after birth since she can't even breathe by herself, and in that case religious people would have said that god had his "reasons" to bring her back to him so soon.

You can actually push the religious reasoning further, god didn't want this girl to live, why would he deprive her of a respiratory system if he wanted her to live? Maybe the doctors have acted against god's will by preventing this girl to die at birth.
When a child die at birth, christians generally say things like "god has his reasons" or "god wanted this soul to go straight to heaven without having to endure life". So, how do we know this wasn't the case here? Maybe this child was supposed to die and Man's technology is getting in the way.

There are also many religious groups, including christians, that think that when a child is being born with a defect, it's a punishment from god because its parents have not led a good religious life, so who's right?

Back in the old days, christians even used to think that when a woman gave birth to a child whith that kind of major defect, it was because she had fornicated with an incubus demon.

thegurgi 27-12-2004 08:19

Quote:

Originally Posted by haku
There are also many religious groups, including christians, that think that when a child is being born with a defect, it's a punishment from god because its parents have not led a good religious life, so who's right?

hehehehehe, sorry... but i have to laugh it this for reasons beyond you'll understand. Just take it from a hospital kid that this is too true. albeit, my parents never blamed their lack of religiousness for my congenital birthdefect, but my GRANDPARENTS (dad's side) sure do

Quote:

Originally Posted by haku
Back in the old days, christians even used to think that when a woman gave birth to a child whith that kind of major defect, it was because she had fornicated with an incubus demon.

for example: 1 time i had a roommate with Tourette's Syndrome. You know, where you can't really control you're speach and what you say and other such things. It's not very common but common enough that we all know what it is, But i'm sure that to his Amish Parents it must have been something they'd never ever expected(well, if they knew anything about the result of inbreeding they wouldn't have, but anyway)... They believed that their child was possessed by a demon and would pound on his chest whenever he'd go into a fit. Well, after about 5 years of doing this, the child's sternum collapsed and i think most of his ribs broke as a result. Anyway, i spent a week in the same room with this kid, i didn't get much sleep (unless i pushed the morphine button a few times), but sometimes the things he screamed we're incredibly funny. Things that we wouldn't dare think of "bad" would shock his parents, i sadly can't remember them, because i was on heavy drugs and it was about 5 or 6 years ago. Though he didn't really say words very much, he would just scream and scream. If i didn't know he had tourette's, i probably would have thought he was possessed too. sigh


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