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Marc Flemming
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Post Florida Family Has Daughter Born Without a Face post #1  quote:



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By Jeannie Blaylock
First Coast News

JACKSONVILLE, FL -- When most parents have a baby, they spend months dreaming about what their bundle of joy will look like. Will she look like mom? Will he have dad's eyes? But for one local Navy family, the birth of their daughter didn't give them the answers to those questions. Their daughter was born without a face.

See the Video.

When Tammy was pregnant, she knew something was wrong. At worst, they thought maybe their baby had a cleft lip.

So Tammy, and her husband Tom, went to the hospital happy, until the birth.

"The nurse is like, 'We got her stable, we need to rush her upstairs,'" explains Tom, as he recalls every minute of that day. "And the nurse asked, 'Do you want your wife to see her now?'"

Tom says he thought to himself, "Before she gets the shock I did, let me take a picture so she's prepared."

Tammy hadn't seen her new baby yet, because she almost bled to death during delivery. Tammy would be okay, meanwhile, dad went to take pictures of his new daughter.

But no matter what, these new parents had a wish. "That if there was something wrong, she wouldn't be alone. We wanted to make sure she felt loved," said Tom, as he began to cry. "She squeezed my hand."

Little Juliana is missing 30 - 40 percent of the bones in her face.

"She has no upper jaw, no cheek bones, no eye sockets, and she's missing the corner of her ear," explains Tom.

Her birth defect is called Treacher Collins Syndrome. Doctors say it's the worst case they've ever seen.

So, how do you get people to see past all the defects, and find her heart? For mom, it just hurts.

"I just wish people would ask questions. Don't just stare," says Tammy. "I guess the most hurtful thing came not long ago, a little girl said she was disgusting."

Juliana has to eat through her stomach, and she has a trach to breathe. Already, less than two years into her life, she's had 14 surgeries. Doctors say she could need at least 30 more.

Every time she goes to the hospital, doctors make a mold of her head, and then reconstruct her skull to figure out the next step.

It's a life-long process that's draining for Tammy and Tom. Even still, they're thankful and full of love for their sweet child.

"God never gives you more than you can handle. I figure she has a lot to show everyone... to show the world," says Tom.

If you are interested in helping the Wetmore family, a savings account is set up for donations at the Vystar Credit Union in Middleburg.

Donations can be made at ANY Vystar Credit Union to Juliana Wetmore at member number 2102465.

Direct donations can be sent to:

Juliana Wetmore
3018 Hickory Glenn Dr.
Orange Park, FL 32065


Old Post 12-13-2004 07:59 PM
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post #2  quote:

Dammit. Poor little kid. Really puts things into perspective man.

-HECK!


Old Post 12-15-2004 03:47 AM
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chodder
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post #3  quote:



Old Post 12-15-2004 04:01 AM
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post #4  quote:

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"God never gives you more than you can handle. I figure she has a lot to show everyone... to show the world," says Tom.


Tell that to the thousands of people who kill themselves every year. This child is a perfect candidate for euthanizing. It's sad, but true. She will only know a life of pain and suffering. Her parents could have a nother, perfectly healthy baby if they focused on it. The loss of a baby now would be hard, but would it be harder than losing her at 5 or 10 years old due to compounded and unforeseen complications? That's just my humble opinion. Maybe you look at it as heartless. I look at it as merciful, sparing her from the agony.


Old Post 12-15-2004 04:21 AM
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post #5  quote:

I have always said to myself that if I ever had a child in this position I would consider Euthanasia. I cannot possibly see a child grow up in a world where hate and discrimination already exist. With a case like this the discrimination will only be worse and the child will be so depressed it will not want to live anymore. I know that if I was a baby born without a face or limbs, I will not want to live. I hope my parents would make the right choice to Euthanize me... it is sad because death is the best option to me then to live a life of cruelty from others. I couldn?t live with myself if I was a vegetable of a mass. If I had any sort of brain function I would seriously contemplate suicide.

Old Post 12-15-2004 04:53 AM
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schmiggens
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post #6  quote:

quote:
Sean Kelly said this in post #4 :
This child is a perfect candidate for euthanizing. It's sad, but true. She will only know a life of pain and suffering. Her parents could have a nother, perfectly healthy baby if they focused on it. The loss of a baby now would be hard, but would it be harder than losing her at 5 or 10 years old due to compounded and unforeseen complications? That's just my humble opinion. Maybe you look at it as heartless. I look at it as merciful, sparing her from the agony.


But she seemed quite normal in the video, playing games and laughing. She would obviously be in pain after surgery, but most of the time she is probably a very normal little girl, except for her face.

They can do amazing things with reconstructive surgery and prosthetics and all that jazz now-a-days. There was a guy who had his face melted and his chin fused to his chest and they made him look excellent. You never know, she might grow up to be a beautiful young lady.


Old Post 12-15-2004 04:58 AM
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post #7  quote:

Yes, they have surgery which can fix the physical aspect of someone. But, it doesn't change the self image one has on themsleves.

Old Post 12-15-2004 05:02 AM
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post #8  quote:

She can go to therapy. If they can afford the cost of all those operations, then she shoudl be able to get a pschcologist too.

Old Post 12-15-2004 05:10 AM
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esskay
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post #9  quote:

Cosmetic surgery doesn't grow. You're talking about repeated surguries up until her head/face reaches it's full adult size sometime in her 20's to 30's. Year after year upgrades. A "normal" person doesn't spend their life thinking about or being forced to do these things, thus this person has no hope of a "normal life" until well after adult-hood. And then how happy is an adult who has never known the meaning of a normal life?

Honestly, I think humans place WAY too much value on the sanctity of life. Every "beautiful and unique butterfly" of life is just "yet another" out of billions presently, trillions in all of history. How many of those trillions of people are truly remembered today? Were they "important"? I suppose they were important in the consider plucking one of them from history and the succesive lineages that would disappear leading right up to modern families in some cases. But do they really matter that they lived in the course of the world, of the Universe? What about the gazillions of ants that we have living in the world that out-number us approximately 1000 to 1 - are THEY less important? What's better about human lives than ants or cockroaches that we needn't respect them as much as we respect ourselves?

I can answer these:

1) Religious books tell us so

2) Self-preservation and the propagation of the species, both natural instincts engrained within every creature, tell us so.

I simply choose to look beyond both of these things. We are the first species in the history of this planet to defeat natural selection. As such, I believe we are exempted from the #2 answer there. Natural instincts shouldn't have any more bearing on our daily choices than they do on our ability to survive.

But to the first point, personally I don't subscribe to the writings of any particular religious book. This allows me to decide for myself what is good & bad, right and wrong. Indeed religion has influenced my thoughts on these decisions, but I have not allowed religion to dictate the answers.

All in all, my views of good, bad, right and wrong do mesh well with many religions, however on this point I expect that there will be strong opposition. I'm okay with that, it's to be expected. I believe it is wrong to force a person unnecessarily to a life of suffering.

(I didn't view the video. I don't even want to see it! The description sounds like an abomination and I'd much rather just not bear witness.)


Old Post 12-15-2004 06:14 AM
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schmiggens
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post #10  quote:

quote:
Sean Kelly said this in post #10 :
Cosmetic surgery doesn't grow. You're talking about repeated surguries up until her head/face reaches it's full adult size sometime in her 20's to 30's. Year after year upgrades. A "normal" person doesn't spend their life thinking about or being forced to do these things, thus this person has no hope of a "normal life" until well after adult-hood. And then how happy is an adult who has never known the meaning of a normal life?


I am certainly not saying it would be easy, I am only saying that it could be done. There are people who are born with cleft palettes and such things who have surgery right through until they are in their twenties. Obviously this little girl is on a slightly higher level to a cleft palette, but it could be done. If two-headed Chang could be fixed, then I dohn't see why this girl can't be fixed too.

quote:
Sean Kelly said this in post #10 :
(I didn't view the video. I don't even want to see it! The description sounds like an abomination and I'd much rather just not bear witness.)


I didn't really watch the video. I saw more of a slideshow on my slow dial-up,I got the idea though. There are some pictures associated with that story here. But it doesn't really show her face front on, only a side view and an X-ray of it.


Old Post 12-15-2004 06:41 AM
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post #11  quote:

A cleft palette is a REALLY bad example. My wife has an invisible cleft palette which according to her is only a minor annoyance from time to time when she gets some food stuck up there. Many people with ones that are visible go their whole lives without bothering with surgery to fix it because it's a minor, well understood and readily accepted birth defect. Missing a significant amount of bone structure from your face seems pretty major by comparrison to me...

Old Post 12-15-2004 06:48 AM
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post #12  quote:

I just checked out the still shots from the video. Abomination. strange that Windows Media Player won't let you screen capture still frames. Stupid DRM crap.

Old Post 12-15-2004 06:54 AM
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post #13  quote:

where are the still shots Sean? I can't see the video, those kind of videos that features ads before hand never work for me. I get the ad, no video afterwards.

Poor little girl though... I'm really cringing at the thought of it all.


Old Post 12-15-2004 07:02 AM
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schmiggens
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post #14  quote:

Hmm .... not a cleft palette, I am thinking of the one where your lips and your nose all join up. What's that called? Harelip?

What about that old guy who got bone cancer in his nose and had to have almost the whole fron of his face removed? He lived, got a plastic face and lives a better life now than he did before.

My point is that it that possible, not neccessarily probable, but possible, for this girl to live a relativly normal life, once she has had all her surgery. Your euthanisation stance just seems a bit harsh. How would you feel if someone wanted to euthanise your wife because of her cleft palette?


Old Post 12-15-2004 07:05 AM
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post #15  quote:

I have a few questions though:
Can she see?
Can she hear?
Can she smell?
Can she communicate in any way to her family?
Can she express emotion?
Does she know or understand ANYTHING that's going on around her at any given time?

I think she may be able to hear, but the rest I'm not so sure about...


Old Post 12-15-2004 07:10 AM
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daemon17
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post #16  quote:

quote:
chodder said this in post #6 :
I have always said to myself that if I ever had a child in this position I would consider Euthanasia. I cannot possibly see a child grow up in a world where hate and discrimination already exist. With a case like this the discrimination will only be worse and the child will be so depressed it will not want to live anymore. I know that if I was a baby born without a face or limbs, I will not want to live. I hope my parents would make the right choice to Euthanize me... it is sad because death is the best option to me then to live a life of cruelty from others. I couldn?t live with myself if I was a vegetable of a mass. If I had any sort of brain function I would seriously contemplate suicide.



Hm I find that interesting, and very sad, that a physical appearance could mean that much to a person. Question: if you foresaw in the future that the child you were going to have would have a disease such as Anorexia or bulimia and you saw that this child was going to hate themselves because they thought that they were ugly, even though they were really beautiful on the outside would you euthanize them too? Because you wouldn't want them to go through that pain?

It seems to me as if no one is really giving the child a chance. Everyone is sitting here talking about how depressed and how terrible her life is going to be because she has a physical deformity. Everyone has already assumed that she will end up this way, yet the girl hasnt even had the chance to decide for herself whether she feels she is ugly or not, or whether she cares about it. Everyone has problems. Some people have family problems, some people have mental disabilities, some people have physical disabilities. It is up to the person to choose how they want to handle the problems that life gives them, and I think it's a bit harsh to assume that she is going to have a terrible life because the world is full of prejudices. There are actually some people in this world who do look beyond physical appearances. I think the parents made the right decision, just because a person doesn't look " normal" doesn't mean that the person is automatically forfeited the right to live. There are so many things that this world has to offer, and let me tell you miracles and blessings come in all shapes and sizes. Who knows maybe this girl will have something that the rest of us don't have. Maybe she will learn to love herself for who she is instead of judging herself because of how she looks, like so many of us do today.

Do I feel sorry for her? Yes. Do I think that she will have a lot of pain in life ? Yes , but I also know that there are a lot of people out there that have just as much pain with and without having a physical deformity, and I have seen some of them get over their problems and learn to live life with a passion.


Old Post 12-15-2004 07:28 AM
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post #17  quote:

But we're talking 30 YEARS of surgery here. That's all my life so far. I can't imagine what a "normal life" would be like in those circumstances. A grown man with a sickness that was treated and a prosthetic replacement is much different from an infant who was mortally deformed at birth..

In fact I was thinking about this a bit more last night and I have to assume that the mother never went through any prenatal care/testing because any of a number of ultrasounds should have revealed this pretty early on and they could have aborted reasonably. I mean how far does deformity have to go before you consider the possibilty of sparing this child a life of suffering? Sounds like they have to be born completely inside out for you to even consider it...


Old Post 12-15-2004 05:56 PM
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post #18  quote:

quote:
daemon17 said this in post #17 :
...if you foresaw in the future that the child you were going to have would have a disease such as Anorexia or bulimia and you saw that this child was going to hate themselves because they thought that they were ugly, even though they were really beautiful on the outside would you euthanize them too? Because you wouldn't want them to go through that pain?


This is VERY different. Anorexia/bulimia are social disorders, but I hear what you are saying: you are calling into question whether to consider terminating a birth for ANY foreknowledge of future suffering. The answer is no, that there are certain degrees. ALL humans suffer in some way during their lives. That is not ever going to change.

But consider the following: suppose this girl grows to be fine and perfectly happy with a prosthetic or bone-transplant face and is so happy and fulfilled to be alive that she decides to have 8 kids who all go off and have 8 kids and so on. Do you think it is responsible for humans to invite such a devastating genetic disorder to remain amongst the reproductive gene pool which increases chances of recurrances in the future? This is where our victory over natural selection gets us into trouble because we facilitate the propagation of the weak.


Old Post 12-15-2004 06:04 PM
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post #19  quote:

This is heartbreaking watching that little girl struggle so much. The fact that she has to go through life having her skull repeatedly cracked open, tracheotomies, feeding tubes. It's unbearable to watch. Why weren't all of the missing skull bones detected in routine prenatal ultrasounds?

I don't agree with euthanizing in this case. Compared to the rest of the functioning world, she should be unhappy and miserable, but she's not. It's all she knows. She expresses joy, pleasure and love. Maybe it's a blessing that she doesn't have the ability to hear. She won't have the knowledge of people's vicious comments about her in life. She will never know the difference between what is perceived as "normal" and "abnormal." She's here. She's alive. All her parents can do is keep touching her in the loving way they do. She understands "touch" as love and comfort. It's a shame, but maybe that's all she will ever need to know in order to be happy. If she were my child, I believe I would go to the ends of the earth to save her life, just as her parents are doing.


Old Post 12-15-2004 07:46 PM
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post #20  quote:

I saw the thing said she had no eye sockets- but does she have working eyes?

Old Post 12-15-2004 07:56 PM
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post #21  quote:

Interesting. I know what you're getting at.

It did say she doesn't have eye sockets, but in the video, she does appear to have eyes. I don't know if she has vision, but she did reach out to someone as they approached her.

Maybe she will be able to see that she appears different than other people.


Old Post 12-15-2004 08:04 PM
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post #22  quote:

quote:
the_way_it_is said this in post #22 :
Maybe she will be able to see that she appears different than other people.


Precisely what I was leading up to... being deaf doesn't seem it'd be any level of insulation if you can see kids pointing and laughing at you. It's possible that it wouldn't be that bad if they successfully graft bone transplants or work out some sort of prosthetic that will shape her face. Having no upper jaw means no upper teeth - she could be the youngest kid ever with a full set of false teeth. Better the way she ended up than with no LOWER jaw which would mean sophisticated connections to muscles and such that would make things much more difficult for surgeons.


Old Post 12-15-2004 08:25 PM
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post #23  quote:

I don't think any of us admit to being in position to offer a professional opinion on the potential of recovery for this girl nor do any of us likely have any great knowledge regarding the types of cutting-edge treatments available now or in the future during her lifetime.

One thing is for certain, our medical society has shown that it continually evolves and expands its abilities to treat situations that were once considered untreatable.

For those who are interested in seeing the lengths people will go to help someone else where others have given up, read the story of Zubaida Sasan.


Old Post 12-15-2004 09:43 PM
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post #24  quote:

quote:
Marc Flemming said this in post #24 :
For those who are interested in seeing the lengths people will go to help someone else where others have given up, read the story of Zubaida Sasan.


WOW!

Its really amazing what they can medically do for people now...I mean, look at the before and after pictures of this girl? Like I said..wow, what a difference!



Old Post 12-15-2004 10:06 PM
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post #25  quote:

I watched the special on Zubiada. It was really amazing what they were able to do for that little girl. It was a truly touching story.

Old Post 12-15-2004 10:57 PM
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post #26  quote:

Sean - You're not alone here. I feel the same way.

Humans are the only animals that would allow this child to grow and live. It's because we've been socialized to do so. But the fact is, that if a mother cat, dog, whatever; gave birth to a defected kitten or pup; they would kill it or at the very least, starve it by not allowing it to nurse. Us socialized humans love to tamper with natural selection with our "technology we have these days". And, what a horrible life for this child to endure!

This is honestly one of the biggest reasons I will never have children.


Old Post 12-16-2004 03:57 AM
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post #27  quote:

Impressive work on that Zubiada lady - what an amazing deformity!

To your point Anomaly77, something I've forgotten to mention here. People will raise the concept ot "Playing God" when it comes to euthanization & abortion. But aren't such amazing surgical transformations also playing god? tampering with God's handywork? Or when you march your armies into another land and kill people? (What happened to thoushalt not kill? To God shall be thy Judge? I don't buy the "Playing god" argument on any level because all humans (short of possibly some aboriginal tribes and the Amish) play God in some fashion and I'm certain that they have no intention to stop.


Old Post 12-16-2004 04:05 AM
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post #28  quote:

Good point Sean.

I love the arguement of "not playing God" when it comes to euthanization & abortion. I always like to ask these people, if their spouse, parent, or child, needed an organ transplant, if they would be opposed to that too. I mean...is it not "playing God" to remove a defective lung/kidney/heart, and replace it with a functionable one from another human being's body?


Old Post 12-16-2004 04:10 AM
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post #29  quote:

The transformation of Zubaida Sasan is amazing!!

She was given a fighting chance. Her parents loved her enough to know that the big smile shown in the after picture was in there somewhere all along.

What a waste of a life it would have been to sentence her to death for being physically unacceptable to other people.

Doctors may not be "God," but I suspect to someone like Zubaida Sasan, the doctors who gave her the ability to lead a functional life are the closest thing to miracle workers on earth.


Old Post 12-16-2004 07:46 AM
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post #30  quote:

quote:
the_way_it_is said this in post #31 :
The transformation of Zubaida Sasan is amazing!!

She was given a fighting chance. Her parents loved her enough to know that the big smile shown in the after picture was in there somewhere all along.

What a waste of a life it would have been to sentence her to death for being physically unacceptable to other people.

Doctors may not be "God," but I suspect to someone like Zubaida Sasan, the doctors who gave her the ability to lead a functional life are the closest thing to miracle workers on earth.



I agree completely


Old Post 12-17-2004 05:49 AM
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