sashime76

My wife and I watched a program on TV the other day: Girl Born Without A Face - Story of Juliana Wetmore.

We were both shocked as soon as we tuned to the channel, it's can be quite graphic for some. After watching it we were both glad that our two boys were born without any birth defect.

I did some research on the story and articles on Treacher Collins Syndrome. I can only express my sympathy for all the families with loved ones born with such defect.

Many forum have discussions on the Juliana Wetmore, it often leads to the debate of whether the little should be kept alive in this particular case.

"Viewer Discretion Advised"

http://www.five.tv/home/frameset/?content=11738777&

It take a lot of love and courage raising a young child like Juliana. How would you deal with the issues and uncertainties?

wolf

Wow, what a brave family. I am not sure how I would handle that. They are very brave for pressing on. I hope the doctors can restore her face.

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sashime76

I think she'd been through some 14 operations already, up to 30 more in her lifetime. Frankly, I wouldn't know what to do myself. But, if detected during early pregnancy, my wife and I both feel it would be better to terminate.

I know this is going to lit some fuses on anti-abortion/pro-life supporters on this forum. Just my personal opinion. Her case is just so severe, I honestly don't think more surgeries can make her anywhere close to looking normal. She is still little, once she gets to 4 or 5 years and older, she will look in the mirror and other kids and that's going to take toll on her young, innocent mind. This is a tough one.

clavus

She'd make a great ambassador. She'd never have to worry about losing face.



...Sorry. I had to do it.

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Jinn

I'm going to have to do some serious thinking about this later, because of the bad bad thoughts it made me have..

...about how I'd sell everything I had and move to another country with a new identity if I had a kid like this. I think I'd be so panicked and ashamed/disgusted I would have to escape.. how horrible..

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vanblah

As I recall it was detected early on in the pregnancy. They were told it would be no more than a cleft palate.


I think you are underestimating how resilient children are.

You probably wouldn't feel that way if it was your kid. It's amazing how quickly you bond with a child regardless of how they look.

Lead543

To quote a friend I have who has Cerebal Palsey...

That's all I have to say about this.

noodle

Julianna lives in my town, she goes to the hospital where I'm based several days a week. She is the coolest little kid. About 2/3 of the kids I work with "look funny", but man, they are the cutest little buggers. My family gets so freaked out when I mention a "cute kid" and my brother now asks "cute, like work, cute? or cute like the rest of us, cute?" Sometimes I want to smack him. Treacher-Collins can be fairly mild looking or severe, as in Julianna's case. amazingly enough, the few kids with that disorder that I've had the privilege of working with had really high IQs. We have an incredible Cleft Palate/Craniofacial Clinic here and they've done an amazing job. You wouldn't believe how awesome and supportive her family is.

No matter how different these kids look, the most common threads are a sweet personality and wicked sense of humor. You'd be surprised, I think, in a few years what they'll be able to do for Julianna. She is amazing. All my kiddos with their huge heads, twisted bodies, and missing limbs have bigger hearts than most of us on this planet. How could you deprive the world or simply yourself of the opportunity to experience their lives? This is such a tough topic for me because these kids also tear me up, with the pain they have to go through. I've watched a two-year-old whip up her shirt in the doctor's office to offer her port to the nurse so they can inject her with more poison that could save her life. The whole time with tears running down her cheeks and no one noticing that she's missing her left leg from the knee down. But most of the kids I work with that have made it to the point in their lives that they can express themselves, have told me that no matter what pain, suffering, etc they had to go through, they lived.

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KellyC

Just randomly browsing through forum pages and I found this...



God dammit Clavus!!!


*apologize for not have anything significant to contribute to the discussion and get the hell out and resume more browsing through pages*

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hrandani

I believe that trauma during childhood enhances neural development.

At least it did in my case..

fallsauce

that's very sweet, fredweena. But I still can't look at amputees (and some other mutated things) without shuddering/flinching/closing my eyes. (side note: is this a real phobia?)

I'm too scared to click on the link, can someone describe it?

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ScottKuma

Not to threadjack, but my three month-old son Evan was born with a birth defect called Moebius Syndrome. Basically his cranio-facial nerves are affected such that he will never be able to smile, make much of a facial expression, or move his eyes from side to side. Because of this - and other problems he's had since birth - he's been in Children's Hospital for more time than he's been home. Admittedly, his case is MUCH less severe than Juliana's....

Until you go through it, it's hard to imagine how you'd feel learning these types of things about your child. It's because I HAVE been through it that I understand how JinnKai feels. There is a real rollercoaster of emotions you go through - and probably will continue to go through for the rest of your life. Some days I feel VERY loving and doting towards him; some days I am much more detached.

I only hope that I can impart a sense of humor and a well-placed sense of self-confidence to Evan so that he can deal with the teasing & curiosity that's sure to come from his peers.

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Spanxxx

Thank you fredweena for that reply. It was a very warm and touching insight into the world of these children.



I find this one to always be a hard thing for me. I always thought one of the best representations of this was in the movie Shallow Hal, where Jack Black's character saw the exterior appearance of someone as a reflection of their true nature. The scene where he went to the children's burn unit was truly touching to me for some reason. It is things like that where I always realize my own inabilities to be less judgemental about appearances.

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ri0tdorque

<i>Ithink she'd been through some 14 operations already, up to 30 more in her lifetime. Frankly, I wouldn't know what to do myself. But, if detected during early pregnancy, my wife and I both feel it would be better to terminate.</i>

ok i hate to say this but i actually had the same thought when i first saw this. it poses some really interesting questions about life/death/and other such things


i happen to be watching the show right now and thanks to google i found this link - and the community seemed interesting so i joined

ri0tdorque

um, hi - i'm watching the show right now and i'm amazed, and after reading your reply i'm somewhat ashamed at myself that my frist thoughts in the beginning of the show were 'that's what pro-choice is for' - i give the parents and you a great amount of props for doing such wonderful work and i just wanted to say that

iblade

A french psychologist, Boris Cyrulnik, has made some thorough research on the subject of kids that go through hardships being smarter than others and overall, leading a better life. He called this "resilience".

Basically, they want to prove to themselves that they are as good as the rest, ending up in generally becoming smarter than the rest...

vsskye

I did the same exact thing. I saw this show last night and it is so sad, no one should have to go through the pain this little girl is going through. She cant even have a slice of her own birthday cake.....

dublhelix

hey, ive got a bone disease... had 18 operations so far...

its painful, but.... as they say... lifes a bitch.

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Derwood

She lacks the facial bone and muscular structures that normally give a face it's shape. The mouth is deformed, there are no ocular sockets to properly hold the eyeballs, and the tongue is severely oversized

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