[Cody Dawg]

Read this moving story.

As you go through the holiday season remember that no matter how bad things seem to be, remember people like this family and their optimism and courage.

to these people and God bless them.

[brapper]

Originally posted by Cody Dawg:
to these people and God bless them.

indeed. that is rough.

[DeathToWindows]

Originally posted by Cody Dawg:

to these people and God bless them.

Seconded.

I hope that girl becomes accepted for who she is. Good luck to her and her parents.
[/WDLove mode]

[MilkmanDan]

Originally posted by DeathToWindows:
Seconded.

I hope that girl becomes accepted for who she is. Good luck to her and her parents.
[/WDLove mode]

Hopefully modern surgery can one day help her out.

[d4nth3m4n]

i think having no food to put on the table or no heat would be a little more pressing of a problem than having a deformed yet healthy child.

stop being so vain cody.

[wataru]

Originally posted by d4nth3m4n:
i think having no food to put on the table or no heat would be a little more pressing of a problem than having a deformed yet healthy child.

stop being so vain cody.

I hope you're kidding. She's hardly "healthy" if she has to eat through a tube in her stomach and breath through what I gather is a slit in her trachea. This is not just a cosmetic issue.

[Disgruntled Head of C-3PO]

"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"

What kind of life is that?


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

What is he showing the rest of the world? How he can make a little girl suffer?

[ManOfSteal]

Wow, that is heart-breaking to say the least; however, it's good to know that her family is very supportive and willing to do anything to make her have the most successful life as possible under her conditions.

[mikellanes]

Originally posted by Disgruntled Head of C-3PO:
""God never gives you more than you can handle. I figure she has a lot to show everyone... to show the world," says Tom."

What is he showing the rest of the world? How he can make a little girl suffer?

It is a rare mutation pure and simple, as far as I have heard they knew far more about the problems than the story leads you to believe, they knew as early as 2 months the baby had deformities of bone structure and might not live, or at least would need drastic reconstructions done.

It was their choice to bring this child in to the world and now it has to suffer and might not live through all the surgery as a result. that is IMO of course.

[wdlove]

That is truly very sad. As the father said, "God never gives us more than we can handle. My prayers go out to Juliana and her parents. Just reminds us that even with our problems other have it worse.

[tooki]

I know this may sound cruel, but wouldn't it have been more humane to not save that child's life? The poor kid is destined for a life of ostracism, not to mention the endless surgeries. I just saw a show about treacher-collins on Discovery Health, and even much, much milder cases require dozens of surgeries to approach something that still looks like a weird, deformed face.

It makes no sense to me that if someone's pet dog had a puppy that deformed, they'd euthanize it, but that a human baby with the same condition -- which will be infinitely more conscious of the defect -- is left to live.

BTW, the syndrome can occur as random mutation, but it's also hereditary, and gets worse with each generation. Typically, it begins as a mutation so small it goes unnoticed until a descendant is diagnosed with a more severe case. (I.e. the child may have a full case, the parent a very slight one, and the grandparent a case so mild that nobody noticed.)

tooki

[Goldfinger]

Originally posted by tooki:
I know this may sound cruel, but wouldn't it have been more humane to not save that child's life? The poor kid is destined for a life of ostracism, not to mention the endless surgeries. I just saw a show about treacher-collins on Discovery Health, and even much, much milder cases require dozens of surgeries to approach something that still looks like a weird, deformed face.

It makes no sense to me that if someone's pet dog had a puppy that deformed, they'd euthanize it, but that a human baby with the same condition -- which will be infinitely more conscious of the defect -- is left to live.

BTW, the syndrome can occur as random mutation, but it's also hereditary, and gets worse with each generation. Typically, it begins as a mutation so small it goes unnoticed until a descendant is diagnosed with a more severe case. (I.e. the child may have a full case, the parent a very slight one, and the grandparent a case so mild that nobody noticed.)

tooki

It doesn't sound cruel. I agree completely.

[the_glassman]

Originally posted by tooki:

It makes no sense to me that if someone's pet dog had a puppy that deformed, they'd euthanize it, but that a human baby with the same condition -- which will be infinitely more conscious of the defect -- is left to live.

tooki

I couldn't agree more, we no longer have survival of the fittest. Instead it's what can medical science do for weak people with bad genes and hereditary diseases.
How many sick animals you see living in the wild?

While researching the disease I found a family that has passed this defect onto at least three generations, and continued to screw up the gene pool. Didn't they ever once stop and say, "maybe I shouldn't be breeding?" It's one thing to have the disease yourself, it's something entirely different to pass it along to your child because you're not educated enough to realize you shouldn't be having children.
(This may not be the case regarding this occurrence)

What would be the most humane thing? Don't ask me, not my kid nor my family.

[Spliffdaddy]

I don't think that a life's worth is something to be judged.

[gerbnl]

Originally posted by tooki:
I know this may sound cruel, but wouldn't it have been more humane to not save that child's life?

[MacNStein]

Originally posted by Spliffdaddy:
I don't think that a life's worth is something to be judged.

Too true. Otherwise, would it have been more humane to put Stephen Hawking out of his "misery" years ago?

[d4nth3m4n]

Originally posted by MacNStein:
Too true. Otherwise, would it have been more humane to put Stephen Hawking out of his "misery" years ago?

they didn't know in the womb that hawking was destined to end up the way he is though.

[TubaMuffins]

as wonderful as medical science is, it does go against nature. in my opinion it would have been better to not have the child, better for future generations and better for the girl. Yes, i said not being born would be better than being born horribly deformed. She will be horribly ridiculed throughout life (especially in school) and suffer physical pain and have to deal with constant medical surgeries. But because her parents chose to let her live, i wish the family their best and i do support their decision even if i dont agree with it.

[tooki]

Originally posted by Spliffdaddy:
I don't think that a life's worth is something to be judged.

What I think needs to be measured is the amount of suffering. That kid is going to suffer tremendously (both physically and psychologically) for her entire life. And since TC is hereditary and seems to get worse every generation, there's practically no chance she could have kids without them having even worse (!) cases of the syndrome.

It seems like her quality of life will be very low.

This is vaguely akin to severe burn victims. The number of extremely severe burns being treated has been increasing markedly over the past few years. Not because more people are getting burned, though: it's that we're able to save victims of even more extreme burns than in the past. The downside is that these people have to live with excruciating deformities. (I dunno if anyone else here saw the show on face transplants. There was this one girl on it whose whole face was just... gone. ::shudder:: ) I honestly doubt I'd want to survive that kind of accident.

tooki

[d4nth3m4n]

the point i was trying to make at the inception of this thread was that were this not a middle class family with a middle class HMO we a) wouldn't be hearing this sob story. and b) the child wouldn't be going through all these surgeries.

to have a thread title like 'OMG THEIR LIFE IS RUINED" is both vain and shallow sighted.

there are many people in the world who have much more pressing issues in their lives than deformed yet relatively functional child.

[CreepingDeth]

I hope you guys aren't calling for euthanasia.

[TubaMuffins]

Originally posted by CreepingDeth:
I hope you guys aren't calling for euthanasia.

most definetely not. now that her parents decided to keep her, i support that. but i think they should have had more information before she was born and been able to make a decision before she was born.

[gerbnl]

Originally posted by CreepingDeth:
I hope you guys aren't calling for euthanasia.

I for one, am...


note: NOT murder! There is a difference, even though you choose not to see it.

[CreepingDeth]

Originally posted by gerbnl:
I for one, am...


note: NOT murder! There is a difference, even though you choose not to see it.

Euthanasia is evil. The government cannot kill people because they feel sorry for them Mercy killing is still killing.

[placebo1969]

Originally posted by CreepingDeth:
Euthanasia is evil. The government cannot kill people because they feel sorry for them MErcy killing is still killing.

Don't you understand? The government can euthanise people because that would have a crappy life. But someone who has killed shouldn't be put to death because it's inhumane.

[gerbnl]

Originally posted by CreepingDeth:
Euthanasia is evil. The government cannot kill people because they feel sorry for them MErcy killing is still killing.

Who is speaking of the government? The only job for the government is making sure the concept of euthanasia isn't abused to commit murder. As for the euthanasia itself: the only ones that can decide to it, is the subject itself and/or their guardians and (using dutch law as an example) at least two medical physicians? doctors that are willing to lay their integrity on the line testifying that not much else can be done. As in how much suffering is involved or even 'quality of life', nobody can and should decide that for them. not me, not you, not the government. And IF, and only IF they decide they want to end the life, it should be possible without to much problems.

[placebo1969]

Originally posted by gerbnl:
Who is speaking of the government? The only job for the government is making sure the concept of euthanasia isn't abused to commit murder. As for the euthanasia itself: the only ones that can decide to it, is the subject itself and/or their guardians and (using dutch law as an example) at least two medical physicians? doctors that are willing to lay their integrity on the line testifying that not much else can be done. As in how much suffering is involved or even 'quality of life', nobody can and should decide that for them. not me, not you, not the government. And IF, and only IF they decide they want to end the life, it should be possible without to much problems.

Do you believe in the death penalty?

[ironknee]

good story...it all depends on the parrents...if as the story portrays them to beas loving and thankful, then she should do fine. But if the parents can't deal with it, and can only see the stares and the comments at the baby, then she has a problem.

[ThinkInsane]

It's pretty easy to talk about euthanizing a deformed baby when it's not your kid. If it were, you would probably do exactly what these folks are doing : Trying to make your child happy and provide them with the absolute best quality of life you can. This is a child you are talking about, not a sick cat. Not one person here has any right to decide who should live and who should be 'put down'. Who else would you have us consider for euthanasia do to their poor quality of life? The mentally retarded? People that have been disfigured in accidents?

I think that criticizing the parents for having the baby that they new was deformed is pretty shallow and callous.

[gerbnl]

Originally posted by placebo1969:
Do you believe in the death penalty?

Hmm, a bit odd to want to 'believe' in a penalty.

But, contrary to what you seem to be hoping for: I'm not against it. However, only when two judicial requirements are met, both of which the US (or any other government) is, until now, unable to do:

- guilt must be 100% irrefutably proven (much harder than you think)
- equality must be guaranteed: money/color/gender/sexual preferences/etc. must not make a difference.

[the_glassman]

Originally posted by CreepingDeth:
Euthanasia is evil. The government cannot kill people because they feel sorry for them Mercy killing is still killing.

Sure they can.

[Xeo]

That is a sad case. I have mixed feelings about medical problems and whether or not you do absolutely everything to keep the child alive or not. If you start calling for abortions or euthanasia when there are problems, you have to draw a line at which problems are worth killing over and which aren't. What problems are OK to fix with medical technology and what problems should we let nature take it's course on? Nature surely would have put the child to death. It couldn't eat or breath on its own. But nature would also rule that people with asthma be put to death. You have an attack and can't recover, you're dead. But medicine saved that child and medicine saves asthma sufferers.

In all honesty, it should be up to the parents. Or rather, should have been... now I would vote that the child be supported since they chose to do it for so long already. But if parents can euthanize children with medical difficulties, how many would choose to have mentally handicapped babies euthanized? They can grow up to lead happy lives just the same as anyone else, even if they have more medical problems, learning difficulties, or a speech problem. So again, a line has to be drawn.

It's a touchy issue. I have no concrete stance on it.

[gerbnl]

Originally posted by ironknee:
good story...it all depends on the parrents...if as the story portrays them to beas loving and thankful, then she should do fine. But if the parents can't deal with it, and can only see the stares and the comments at the baby, then she has a problem.

If parents can't deal with a deformed kid, the kid has an extra problem anyway, but i'd say the parents will have a hard time finding the prerequisite medical support for euthanasia. You guys seem to forget this is not an overnight decision anyway. It leaves a huge papertrail to stay within the borders any such law should lay out. Anything amiss should lead to a murder investigation.

[FulcrumPilot]

I will be surprised if the facial prosthetics technologies don't transform her by the time she is a teenager.

oh, BTW, those even asking why euthanasia was not considered are insane and spineless cowards!!

[gerbnl]

Originally posted by the_glassman:
Sure they can.

Don't forget to read the last bit. (where is stated that this practise is being done all the time without a legal basis) All the more reason to get decent legislation.

[gerbnl]

Originally posted by FulcrumPilot:
I will be surprised if the facial prosthetics technologies don't transform her by the time she is a teenager.

We can only hope. At least, in this particular case, she has that chance. There's numerous cases where such hopes do not exist.

[gerbnl]

Originally posted by ThinkInsane:
It's pretty easy to talk about euthanizing a deformed baby when it's not your kid.

Is it? On this board? WTF? Is that why you are named ThinkInsane?

I think it's much easier to dismiss the whole problem and declare euthanasie not done whatever.

I think that criticizing the parents for having the baby that they knew was deformed is pretty shallow and callous.

Here we agree. They choose to have the baby, it's their decision!

[placebo1969]

Originally posted by gerbnl:
Hmm, a bit odd to want to 'believe' in a penalty.

But, contrary to what you seem to be hoping for: I'm not against it. However, only when two judicial requirements are met, both of which the US (or any other government) is, until now, unable to do:

- guilt must be 100% irrefutably proven (much harder than you think)
- equality must be guaranteed: money/color/gender/sexual preferences/etc. must not make a difference.

Point taken about “believing” in the death penalty. However, you say that you are not against with certain provisions. However, you set the bar that you admit has never been reached. Wouldn’t that be a defacto “no”?

But using your logic, wouldn’t you want “100%” proof that euthanizing someone is the last possible choice to make? Or that there is monetary equity?

Personally, I’m torn. I’ve had cancer when was 23 and have been in remission for 12 years now. But I don’t know if could go through that again. It’s just that I’ve seen often times people who support euthanasia and/or abortion don’t support in the death penalty. In the former cases, that person didn’t do anything wrong and in the latter, obviously did so.

[gerbnl]

Originally posted by placebo1969:
Point taken about “believing” in the death penalty. However, you say that you are not against with certain provisions. However, you set the bar that you admit has never been reached. Wouldn’t that be a defacto “no”?

I didn't set the bar, they are derivative from our own ethics/human rights/etc.. But you are right enough, it would amount to a 'no' in many specific cases. I hope you are aware that the US system with the juries leaves much to desire. and that too many serve time while innocent. Luckily technology makes much progress becoming better and better in really proving things. I'm optimistic in the end we will get at least the proof part right. (even though lawyers and persecutors... no, i won't even go there!)

But using your logic, wouldn’t you want “100%” proof that euthanizing someone is the last possible choice to make? Or that there is monetary equity?

Yes, of course I would want it to be the last possible action, but i also want it legal and legislated. I wouldn't want it misused to kill and i wouldn't want my loved ones persecuted for murder because they granted me my last will and "pulled the plug".

Personally, I’m torn. I’ve had cancer when was 23 and have been in remission for 12 years now. But I don’t know if could go through that again.

I can only hope you'll never be forced to find out.

[placebo1969]

Originally posted by gerbnl:
I didn't set the bar, they are derivative from our own ethics/human rights/etc.. But you are right enough, it would amount to a 'no' in many specific cases. I hope you are aware that the US system with the juries leaves much to desire. and that too many serve time while innocent. Luckily technology makes much progress becoming better and better in really proving things. I'm optimistic in the end we will get at least the proof part right. (even though lawyers and persecutors... no, i won't even go there!)

Yes, of course I would want it to be the last possible action, but i also want it legal and legislated. I wouldn't want it misused to kill and i wouldn't want my loved ones persecuted for murder because they granted me my last will and "pulled the plug".

I can only hope you'll never be forced to find out.

On the last part, we are in total agreement.

[spiky_dog]

Originally posted by tooki:
It seems like her quality of life will be very low.

This is vaguely akin to severe burn victims.

tooki,

one of the classes i took this past quarter dealt with these issues. some surprising facts:

- for spinal cord injury patients the incidence of suicide is ~5x higher than average initially, but by 5 years post-injury returns to the level of the general population
- incidence of major diagnostic depression is ~22% for spinal cord injury patients, with most patients never experiencing depression
- 92-93% of patients with high tetraplegia say they are glad to be alive, ~60% say their quality of life is good to excellent, while ~15% say it is poor or give no response (Whiteneck et al., 1985)
- compare the previous to the expectations of emergency personnel (and presumably the general public as reflected in your comments), of whom only 18% said they'd expect be glad to be alive if they had a spinal injury

my point in all of this is that quality of life is something that we are poorly equipped to judge. the same holds true for burn victims, people with debilitating diseases such as osteogenesis imperfecta, etc. as it does for spinal cord injury patients.

[hagheid]

Originally posted by ThinkInsane:


I think that criticizing the parents for having the baby that they new was deformed is pretty shallow and callous.

That's putting it VERY mildly but what else would you expect from hairy-palmed losers who are emotionally attached to machines.

[DigitalEl]

Treacher Collins Syndrome

I got chills reading that and I'm tearing up. This explains someone I saw at the Denver International Airport in 2000. I had never seen anything like it before and the image haunts me. I didn't know what the guy had or how he could possibly live with whatever it was. Treacher Collins Syndrome is what it was.

<sigh> Even though I don't think he couldn't see me through the crowd of people .. as we were on different cars on the landside/airside shuttle train .. I'm sure I stared.

God bless that little girl, indeed.

[Goldfinger]

It sure is quite an accomplishment of the parents to be able to live with that kid. I for one couldn't. I could never live with a handicapped child. Great they can. But if it's the right choice, I don't know, noone can say that for sure. One can only wait untill the kid is old enough too talk about her situation to know if it was a good or wrong decision.

[gerbnl]

Originally posted by Goldfinger:
It sure is quite an accomplishment of the parents to be able to live with that kid. I for one couldn't. I could never live with a handicapped child. Great they can. But if it's the right choice, I don't know, noone can say that for sure. One can only wait untill the kid is old enough too talk about her situation to know if it was a good or wrong decision.

If the kid reaches an age high enough to be able to talk about her situation, then it was the good decision.

As for your assessment of you own abilities: You'll never know until reality forces you to make the decision, only then you will know if you can/want or not.

[Cody Dawg]

Too true. Otherwise, would it have been more humane to put Stephen Hawking out of his "misery" years ago?

Great post from the great MacNStein, as usual.



My spouse and I were discussing this yesterday. When we were pregnant with our last baby we were told that our baby had an increased chance of having trisomy 18 which causes similar severe birth defects. This was mentioned because ultrasounds revealed choroid plexus cysts on his brain. We had to get the amniocentesis done and spent 21 days waiting for DNA results and then we had to go back for 4D ultrasounds to check the baby's internal organs and brain. We did a lot of soul searching.

To be honest, I'm not sure that we would have continued a pregnancy if we found severe defects. But, I'm not sure that we would have had the strength to end an advanced pregnancy that meant the death of our baby in utero. I doubt we could have. There is something entirely repugnant and repulsive about ending any baby's life, for any reason.

Now, this little girl was born without a face. That is horrible, yes. But, we have modern medicine and the ability to build her a face. Look at how wonderful Helen Keller was after all - a supposed deaf blind mute. Like MacNStein mentioned look at Stephen Hawking.

Sometimes the body is secondary to the soul and the brain, you know? You may not have a perfect body but you are still able to enjoy the sunlight on your skin, the feeling of warm water on your body, the caress of another human being, the joy at being alive one more day.

Every single day of our lives contains a myriad of reasons to be thankful for another day of life. Who are we to deny that to someone because that person lacks a perfect physical body? She was not born without a brain but without a face.

I predict that one day we will see her on Oprah as a perfectly normal-appearing girl.

[Mafia]

hopefully science will figure out a way to save this girl. i'm interested to see what the condition of her brain is, will she be able to learn and have normal thought. still i see it hard to lead a life with a condition like that.

[gerbnl]

Originally posted by Cody Dawg:

Originally posted by MacNStein:
Otherwise, would it have been more humane to put Stephen Hawking out of his "misery" years ago?

Great post from the great MacNStein, as usual.

No, dump post! Two reasons:

1) It obfuscates the discussion by injecting false sentiment into it. Countless potential "Stephen Hawking's" died because of simple malnutrition, but that fact never spawned a "War on Hunger". Who will ever know whether the cure for cancer was run over by a car, or shot in the head in a - possibly - pointless war? (or how many times that happend?)

2) It positions the subject as a victim instead of as a participant. If SH would have chosen to die he should have had that freedom. (and don't start about babies not having a voice, because their parents play the role of voice))


The fact that you and your spouse would never take that decision is fine, it's your decision and your right to take it (after all you will have to live with the consequences).

My whole point is that if others decide otherwise at least accept their freedom to do so. I'm not saying you can't try to convince them otherwise, but you can't decide for them.


Anyway, i posted already too much on this, my view is in the thread and my fingers hurt.

[MacNStein]

Originally posted by gerbnl:

No, dump post! Two reasons:

1) It obfuscates the discussion by injecting false sentiment into it. Countless potential "Stephen Hawking's" died because of simple malnutrition, but that fact never spawned a "War on Hunger". Who will ever know whether the cure for cancer was run over by a car, or shot in the head in a - possibly - pointless war? (or how many times that happend?)

2) It positions the subject as a victim instead of as a participant. If SH would have chosen to die he should have had that freedom. (and don't start about babies not having a voice, because their parents play the role of voice))

No, it's a very good comparison, because if someone wanted to kill Hawking, they could do so quite easily, just like an unborn child or a malformed infant. Take away his fancy equipment and he's just another mute, "useless" invalid. However, out of our great mercy, we didn't just leave him out in the cold to die of exposure (though, that almost happened, accidentally), we worked hard to help him overcome his communication problems so that he can express himself and live a better life, much to our benefit.

We should do the same for children who have such problems, maybe they can contribute as much as Dr. Hawking (or more). Their unique position could actually be a benefit to us all.

[ThinkInsane]

And yet you advocate for a parent being able to decide that a cild doesn't have the right to live because of a deformity? Everyone has a right to live, unless you do something that makes that right forfeit. The parents have no more right to say "kill my child, she's suffering too much and I want to be able to go to the movies once in a while" than you or I do. They have no right.

I agree, rational, informed adults should have the right to take their own life if they are terminally ill. A child has no ability to understand the implications of such a decision. No one else has a right to do that. My mother's antecedent "I brought you into this world and i'll take you back out" just doesn't fly. I think the cases where death being in a child's best interest are pretty few and far between.

And again, I'll reiterate: If this was your child, born with a horrible birth defect, I doubt you would have such a cavalier attitude about putting that child 'down'. You'd do exactly what these people are doing. Trying to give the child the best quality of life you can while hoping against hope that medical science will come up with something to let that child live a normal life.