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View Full Version : Would you let her die? Would you personally prefer to die?


Incredible Hulctuary
11-25-2012, 05:58 PM
The spoiler has a picture of a girl so severely deformed that she doesn't look human. She has Treacher Collins Syndrome, the worst case of it the doctors have seen. If pictures like this give you nightmares or you're a pregnant woman or you have a full stomach, you are warned not to look at it.

She has to be fed directly through her stomach, has had 14 surgeries as of the article date (when she was less than 2 years old), and doctors said she'll need at least 30 more (a 2010 article said she was on surgery #39).

YOU HAVE BEEN WARNED!
http://www.psychinaction.com/uimages//224_O.jpg
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.

http://www.psychinaction.com/index.cgi?det=1&intArticleID=392&sID=11


If you were born like that, would you prefer to die? If your daughter was born like that, would you let her die?

For the first, for the sake of argument assume that you somehow have the knowledge at birth to understand the seriousness of your condition and what it means for the rest of your life. For the second, assume that you have the right to refuse to let her get the extraordinary surgeries required to keep her alive, and refusing the next one when it's due would result in a quick and painless death a few weeks later.

General Apathy
11-25-2012, 06:08 PM
No idea

Guest
11-25-2012, 06:09 PM
I voted for the middle option. Death for both.

General Apathy
11-25-2012, 06:10 PM
But most parents will feel a loving connection even to a deformed child. If it were my baby I would do whatever I could to fix her life.

Incredible Hulctuary
11-25-2012, 06:14 PM
But most parents will feel a loving connection even to a deformed child. If it were my baby I would do whatever I could to fix her life.

Some parents would say the loving thing to do is to end the child's suffering by letting the kid die.

Guest
11-25-2012, 06:16 PM
After some further research it looks like it is difficult if not impossible to diagnose before birth so I am curious how the "let her die" option would even be legal...

General Apathy
11-25-2012, 06:17 PM
Some parents would say the loving thing to do is to end the child's suffering by letting the kid die.

Do you have kids? I have no idea.

But every parent I know with a disabled or mortally sick kid rally around their child 100%. Any "Kill the kid" mantra is coming from people who aren't close to the issue and usually don't have children. IME.

Incredible Hulctuary
11-25-2012, 06:23 PM
After some further research it looks like it is difficult if not impossible to diagnose before birth so I am curious how the "let her die" option would even be legal...

"Let her die" would be by refusing the extraordinary surgeries. See the last paragraph of the initial post. For the sake of argument assume that you're in a state or country where it's legal to decline the particular surgeries that might keep her alive.

snoo
11-25-2012, 06:26 PM
Wish I didn't open this thread!!! I appreciate the warning of the pic. I'm pregnant and did not look. I read the article and it's a heartbreaking situation. I am not yet a parent but I would do everything possible to give my child a normal of life as possible.

I worry all the time about something being wrong. Doctors only test for some things. I hope everyday for a healthy child...

Baby, ByeBye
11-25-2012, 06:31 PM
Wish I didn't open this thread!!! I appreciate the warning of the pic. I'm pregnant and did not look. I read the article and it's a heartbreaking situation. I am not yet a parent but I would do everything possible to give my child a normal of life as possible.

I worry all the time about something being wrong. Doctors only test for some things. I hope everyday for a healthy child...

Didn't know you were pregnant, Congratz!

ao fan
11-25-2012, 06:31 PM
"says Tammy. "I guess the most hurtful thing came not long ago, a little girl said she was disgusting.""

well, she is disgusting, so ummmmmm

snoo
11-25-2012, 06:33 PM
"says Tammy. "I guess the most hurtful thing came not long ago, a little girl said she was disgusting.""

well, she is disgusting, so ummmmmm

Yeah kids don't have a filter and I'm not sure at what age they understand that words can hurt other's feelings...

snoo
11-25-2012, 06:34 PM
Didn't know you were pregnant, Congratz!

Thanks!!

ao fan
11-25-2012, 06:35 PM
i don't think that anyone could know what they would do unless put in the situation. if it was found prenatal, i'd definitely have an abortion though.

Baby, ByeBye
11-25-2012, 06:36 PM
Yeah kids don't have a filter and I'm not sure at what age they understand that words can hurt other's feelings...

Judging from this forum, probably never

Baby, ByeBye
11-25-2012, 06:37 PM
i don't think that anyone could know what they would do unless put in the situation. if it was found prenatal, i'd definitely have an abortion though.

I might get nightmares if I had an abortion (horror movies argh!)
Then again, I might get nightmares if my child looked like that

LifeIsAPoissonProcess
11-25-2012, 06:52 PM
I wonder what kind of prenatal indicators there are for this condition. This decision needs to be made closer to the time of birth, not when she's 2. That's getting into A Modest Proposal territory.

Incredible Hulctuary
11-25-2012, 06:58 PM
I wonder what kind of prenatal indicators there are for this condition. This decision needs to be made closer to the time of birth, not when she's 2. That's getting into A Modest Proposal territory.

For the purpose of this thread, assume you're making the decision right after birth -- either you put her through the 40+ surgeries and other procedures (lifelong tube into the stomach for feeding etc.) and hope she'll stay alive, or decline the upcoming experimental surgery which she probably won't live long without.

snoo
11-25-2012, 07:03 PM
I would think they would be able to tell from the first ultrasound but maybe not. My ob-gyn didn't do an ultrasound until 12 weeks and that was to look for soft marker(s) for down syndrome... Not sure how typical it is to wait till 12 weeks for the first u/s as every doctor is different. I did have an u/s around 8 weeks due to a scare but that turned out ok (thankfully).

Keep It Real, Yo
11-25-2012, 07:06 PM
"says Tammy. "I guess the most hurtful thing came not long ago, a little girl said she was disgusting.""

well, she is disgusting, so ummmmmm

It's still hurtful

Keep It Real, Yo
11-25-2012, 07:06 PM
How bad is the suffering? I know a child that can't do anything at all, can't talk, can't walk...
but you know when he's happy and he's had a good life

Poincare
11-25-2012, 07:23 PM
I wonder at all the pain the child feels while recovering from all those surgeries. Is that even humane?
:shudder:

TheShark
11-25-2012, 07:29 PM
We should all be grateful about the lives we lead after reading this thread.

Keep It Real, Yo
11-25-2012, 07:31 PM
Did some googling... Juliana Wetmore is now nine years old and seems to be in (relative) good health. They made an attempt at giving her a cheekbone. It doesn't look good but apparently Juliana likes it.

ao fan
11-25-2012, 07:33 PM
We should all be grateful about the lives we lead after reading this thread.

why?

snoo
11-25-2012, 07:40 PM
I clicked on the link because I wasn't sure if what was quoted above was the entire story. :-( I didn't realize this was a hereditary disorder. From what I've read she should have normal intelligence... It is so sad and scary thinking about stuff that can go wrong.

Serena
11-25-2012, 07:50 PM
Wish I didn't open this thread!!! I appreciate the warning of the pic. I'm pregnant and did not look. I read the article and it's a heartbreaking situation. I am not yet a parent but I would do everything possible to give my child a normal of life as possible.

As would 99.9% of parents. It's just the way most of us are wired.

I have a hard time even thinking about these kinds of things. I am thankful every day that my kids are healthy.

I think if I knew prior to birth, I would opt not to continue the pregnancy. In this case, I'd want to know what the realistic prognosis was for putting her through all of the surgeries. If they think they can give her a shot, even a long shot, at a relatively "normal" life, then I'd let them keep going assuming her pain was manageable. I think I would try to give her the best life I could. I think most any parent would do that.

The Drunken Actuary
11-25-2012, 07:55 PM
Wish I didn't open this thread!!! I appreciate the warning of the pic. I'm pregnant and did not look. I read the article and it's a heartbreaking situation. I am not yet a parent but I would do everything possible to give my child a normal of life as possible.

I worry all the time about something being wrong. Doctors only test for some things. I hope everyday for a healthy child...

I'm not pregnant and didn't look either. I learned a long time ago (the hard way) to heed such warnings.

I can't really answer the poll without being in the situation. No idea what I would do.

The Drunken Actuary
11-25-2012, 07:58 PM
why?

Seems obvious.

ao fan
11-25-2012, 07:59 PM
Seems obvious.
just because i don't have this disease i need to be grateful for my life? that seems silly.

The Drunken Actuary
11-25-2012, 08:05 PM
just because i don't have this disease i need to be grateful for my life? that seems silly.

See, I told you it was obvious. I never said you had to agree.

Baby, ByeBye
11-25-2012, 08:59 PM
I'll tell you what's disgusting ... your post ... shame on you

you don't think the kid looks disgusting? (why would we even be having this thread)

Colonel Smoothie
11-25-2012, 09:02 PM
I'll tell you what's disgusting ... your post ... shame on you

Yeah, I'm wondering why this isn't in political, where it belongs.

TheShark
11-25-2012, 09:17 PM
why?

just because i don't have this disease i need to be grateful for my life? that seems silly.

Um, yes, because your life could be a lot worse than what it is now.

so you think that the kid is cute?

:troll:

Baby, ByeBye
11-25-2012, 09:19 PM
Um, yes, because your life could be a lot worse than what it is now.


not to be rude. but that's a silly to be grateful. does that mean the girl in the OP should be grateful too because her life could be even worse than now?

ao fan
11-25-2012, 09:21 PM
guess i deleted my post too slowly. oh well.

ao fan
11-25-2012, 09:22 PM
Um, yes, because your life could be a lot worse than what it is now.


that's a silly reason to be required to be happy about my life if i'm not. so the only person who is allowed to be miserable is the worst off person on earth?

TheShark
11-25-2012, 09:23 PM
not to be rude. but that's a silly to be grateful. does that mean the girl in the OP should be grateful too because her life could be even worse than now?

Her life could be worse, yes. I've read recent articles about her and I haven't read any mention of her suffering from daily physical pains. If she had that in addition to her current condition, her life would have been worse.

Baby, ByeBye
11-25-2012, 09:24 PM
Her life could be worse, yes. I've read recent articles about her and I haven't read any mention of her suffering from daily physical pains. If she had that in addition to her current condition, her life would have been worse.

right, but that doesn't mean she should be grateful for having this disease. just like it doesn't mean ao fan should be grateful for her life. everyone is born with a certain condition. we deal with the cards we're dealt with. no need to be grateful for purely hypothetical alternatives.

TheShark
11-25-2012, 09:24 PM
that's a silly reason to be required to be happy about my life if i'm not. so the only person who is allowed to be miserable is the worst off person on earth?

If you choose to be miserable, then that's your choice. But I can tell you that it pays off more to be happy than to be miserable.

ao fan
11-25-2012, 09:27 PM
If you choose to be miserable, then that's your choice. But I can tell you that it pays off more to be happy than to be miserable.

okay, so i'll snap my fingers and be happy then.

*snap* done!

Noddy
11-25-2012, 09:33 PM
you don't think the kid looks disgusting? (why would we even be having this thread)

I didn't even click the link as I suffer when I see suffering. So I heeded well the warning. What I was referring to was pretty disgusting though.

TheShark
11-25-2012, 10:04 PM
I didn't even click the link as I suffer when I see suffering. So I heeded well the warning. What I was referring to was pretty disgusting though.

For once I agree with you, you white knight.

ao fan
11-25-2012, 10:05 PM
I didn't even click the link as I suffer when I see suffering. So I heeded well the warning. What I was referring to was pretty disgusting though.

bummer

Incredible Hulctuary
11-25-2012, 10:34 PM
Her life could be worse, yes. I've read recent articles about her and I haven't read any mention of her suffering from daily physical pains. If she had that in addition to her current condition, her life would have been worse.

I wonder about the extent to which she can express her pain. Her mouth is too malformed to talk, and a recent picture of her outside a hospital shows an apparent breathing apparatus on her throat, so she presumably still can't use her vocal cords to make any screaming or squirming sounds in response to pain. Whatever pain the family is aware of is probably a lot less than what she actually feels.

PeppermintPatty
11-25-2012, 11:05 PM
After some further research it looks like it is difficult if not impossible to diagnose before birth so I am curious how the "let her die" option would even be legal...Hmm, an adult could refuse the surgeries to insert a breathing tube or a feeding tube. But maybe you can't do that on behalf of a child.

I wonder about the extent to which she can express her pain. Her mouth is too malformed to talk, and a recent picture of her outside a hospital shows an apparent breathing apparatus on her throat, so she presumably still can't use her vocal cords to make any screaming or squirming sounds in response to pain. Whatever pain the family is aware of is probably a lot less than what she actually feels.

And yet, the updated article says that she does talk,

“Even though Juliana doesn’t look very different, she apparently feels different,” Jeanne wrote. “She can feel firmness now where there wasn’t any before. She puts her fingers beneath her eyes and says “I love my new cheeks”! So amazing!

And her posture and body language appear normal in that photo of her at age 8. Her face is hard to look at, but as she reaches her full size, doctors will probably be able to make it look better, and function better, too. It sounds like she can be treated for all of her physical problems, except that she looks ugly. I don't think being ugly is a reason to kill a baby.

Incredible Hulctuary
11-26-2012, 12:16 AM
And yet, the updated article says that she does talk,
Talk with her mouth? Or use her hands to communicate?

Meanwhile, Juliana is still learning signs and reading at a fast pace. Her parents are hoping in about two years she'll be able to eat and speak. Right now, for example, she can lick cheese off a pretzel stick but must still be fed through a tube in her stomach.

ditkaworshipper
11-26-2012, 02:25 AM
In this world where post birth abortion is both moral and legal, what exactly does the market for baby meat offer? This could affect my decision.

General Apathy
11-26-2012, 08:24 AM
In this world where post birth abortion is both moral and legal, what exactly does the market for baby meat offer? This could affect my decision.

:shake:

Anthemyst
11-26-2012, 08:59 AM
I think for me to prefer death, which as far as I can tell is permanant non-consciousness, I would have to be experiencing a lot of regular suffering. Otherwise I would put up with a lot of physical deformities and handicaps to stay alive. I would make the same decision for a child I had, but if a condition like this were detected early in a pregnancy I might terminate it. And if I found out any future children were at high risk for a condition like this, I would probably forego pregnancy and opt for adoption.

Baby, ByeBye
11-26-2012, 09:08 AM
:shake:

:iatp:

Incredible Hulctuary
11-26-2012, 09:11 AM
And if I found out any future children were at high risk for a condition like this, I would probably forego pregnancy and opt for adoption.

It's a genetically transmitted disease carried by a particular gene mutation with a probability of a child being affected as high as 50% if just one parent has the mutation. The parents decided against having another biological child because of it. They adopted another girl with a much milder version of the same syndrome, who will need an estimated total of less than 10 surgeries. Kudos to them for that, as that girl probably would never be adopted by anybody.

Anthemyst
11-26-2012, 09:12 AM
That's actually what the parents did; it's a genetically transmitted disease carried by a particular gene mutation, and the parents decided against having another biological child because of it. They adopted another girl with a much milder version of the same syndrome, who will need an estimated total of less than 10 surgeries. Kudos to them for that, as that girl probably would never be adopted by anybody.

Oh, that's sweet.

PeppermintPatty
11-26-2012, 11:57 AM
Talk with her mouth? Or use her hands to communicate?

Who cares. If she speaks with her mouth or with her hands, it's not hard to determine if she is happy or miserable.

I would also choose to adopt rather than birth babies if I thought my offspring would have a high risk for this, but I wouldn't kill (or deny medical care to) a baby who was already born who had it.

gadzookz
11-26-2012, 11:59 AM
Talk with her mouth? Or use her hands to communicate?Meanwhile, Juliana is still learning signs and reading at a fast pace. Her parents are hoping in about two years she'll be able to eat and speak. Right now, for example, she can lick cheese off a pretzel stick but must still be fed through a tube in her stomach.

Searching for updates, too, I read the same quotes you have above from an article in Feb 2010 (http://www.firstcoastnews.com/news/local/story.aspx?storyid=151904) when she was 6 years old. The main point of this story is about the adopted sister you mentioned in another post.

Two long years later, Danica is now Juliana's new sister through adoption. "You just can't wipe the smile off that little girl's face," Thom Wetmore said of Danica.

Juliana, though difficult to understand, said softly, "That's my sister."

Danica will likely need special hearing aids, perhaps a type called "cochlear baha," which are implants directly into her head.

Juliana is progressing well with that type of hearing aid and can answer someone standing behind her using soft words or a flurry of sign language.

Children with Treacher Collins typically have above-average- intelligence. Juliana's surgeon in Miami said she could go to college someday, Teacher said

Danica already is soaking up new signs, communicating with enthusiasm and getting used to her new life.

She had never seen a bathtub before, Tami Wetmore said, because she only had showers at the orphanage in the Ukraine. Now Danica is having a blast taking baths.

The Wetmores have insurance through the Navy and years of experience with experts in the field of Treacher Collins. They said that background, has made adopting Danica just the right move for them.

And the Wetmores said the fact that Danica and Juliana are only two months apart will be a blessing for both girls as they grow up and rely on each other to face the world with their own special challenges.

Danica, Thom Wetmore said, isn't scared of anything, but when she came to the First Coast, she weighed only 30 pounds, apparently due to a lack of a nutritious diet or enough food in Ukraine. Juliana already weighed about 60 pounds.

ditkaworshipper
11-26-2012, 12:30 PM
:shake:

FTR, I would keep the kid...maybe not if it was detected during pregnancy though. My point was that the slippery slope you get into once you start talking about euthanizing your own children.

ElDucky
11-26-2012, 12:48 PM
"says Tammy. "I guess the most hurtful thing came not long ago, a little girl said she was disgusting.""

well, she is disgusting, so ummmmmm

you are disgusting

Redhead
11-26-2012, 12:50 PM
just because i don't have this disease i need to be grateful for my life? that seems silly.

Are you freaking serious?

Wow. Just wow.

Noddy
11-26-2012, 12:50 PM
"says Tammy. "I guess the most hurtful thing came not long ago, a little girl said she was disgusting.""

well, she is disgusting, so ummmmmm

I'll tell you what's disgusting ... you and that post of yours ... shame on you.

Incredible Hulctuary
11-26-2012, 02:37 PM
FTR, I would keep the kid...maybe not if it was detected during pregnancy though. My point was that the slippery slope you get into once you start talking about euthanizing your own children.

Which is not what we're talking about here.