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(KHOU Houston)   Little girl born with liver and intestines outside of her body finally goes home after 850 days. Boy, It's dusty in Texas   (khou.com) divider line 17
    More: Spiffy, Adalynn  
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9978 clicks; posted to Main » on 06 Dec 2012 at 5:40 PM (1 year ago)   |  Favorite    |   share:  Share on Twitter share via Email Share on Facebook   more»



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2012-12-06 06:00:00 PM
5 votes:
Lot's won't agree with me but that is a lot of pain and suffering to put a baby through. Surgery after surgery after surgery??? What kind of quality of life is that??? I would never do that to a child of my own, nor would I have wanted to suffer through two years of torture like that if I had been born with that kind of defect. "Life at any cost" is not always kind. "Life at any cost" can be extremely selfish. Sometimes it is more merciful and loving to let someone die. Yeah - I said it.
2012-12-06 06:32:19 PM
3 votes:

brimed03: /who are you trying to spare? The child? Or yourself?


Myself. And the child, since it can't make decisions for itself, and as far as I'm concerned, when I give birth, I am GOD to that child. If I had a baby that was going to be ill, need constant surgeries, die young, or be so handicapped that it would need constant care or be a vegetable, you bet your ass I'd let it die.

In fact I did do that. There's lots of babies in the world, and mine was not worth a million dollars of surgery so she could die before she was an adult, anyway. Just because we can save them doesn't always that we should.

Is this little girl going to have a normal life now? Is she OK, or is she going to keep needing surgeries her whole life, be fed through a feeding tube, be weak and sickly, and in the end die before she reaches 20 anyway? Hell, all she's doing here is leaving the hospital. Two years in a hospital doesn't exactly scream "you're perfectly OK now, go out and live your life."
2012-12-06 06:17:14 PM
3 votes:

Three-Fifty: Lot's won't agree with me but that is a lot of pain and suffering to put a baby through. Surgery after surgery after surgery??? What kind of quality of life is that??? I would never do that to a child of my own, nor would I have wanted to suffer through two years of torture like that if I had been born with that kind of defect. "Life at any cost" is not always kind. "Life at any cost" can be extremely selfish. Sometimes it is more merciful and loving to let someone die. Yeah - I said it.


My first born had an ongoing seizure disorder that between the constant seizures and the drug induced stupor the treatment left him had a very poor quality of life. That being said, we tried for the 23 months he lived to figure out what was causing the seizures and get them stopped. Once his meds got balanced out, his quality of life was better, but because of the insane amounts of medication he was on, he was dealing with kidney stones and having a horrible, horrible time of it. At 23 months he died of an accidental overdose. I would have done anything to keep him here and I cannot imagine how different my life would have been if he had lived.

All that being said, when he was almost a year old, we shared a hospital room with another boy who had been born with his intestines outside his body. He was almost 2 and was getting his colostomy bag removed and his colon reattached for his (hopefully) final surgery. He was bright, interactive and a sweet boy. You should have seen the excitement in the room when his grandfather held up a dirty diaper with his first poop in it. To this day it brings tears to my eyes.

I was so envious of that family, because after their long ordeal, they WERE going to get to return to a normal life. in 20 years (hell it's been 16 now) he would have been a normal, functioning almost adult. I would advocate paying the $4M in medical bills every day if it means a decent outcome.

The money spent on my own child's medical bills I am less certain about because we didn't get a good outcome.. but how could we have known that when we began the process at 6 weeks of age? You can't, I can't...

When it comes down to it, if you can look a parent in the eyes, while you hold their child and tell them, "No, it's not any use," THEN and only then is it not worth the money spent or the pain endured.
2012-12-06 06:02:41 PM
2 votes:

Three-Fifty: Lot's won't agree with me but that is a lot of pain and suffering to put a baby through. Surgery after surgery after surgery??? What kind of quality of life is that??? I would never do that to a child of my own, nor would I have wanted to suffer through two years of torture like that if I had been born with that kind of defect. "Life at any cost" is not always kind. "Life at any cost" can be extremely selfish. Sometimes it is more merciful and loving to let someone die. Yeah - I said it.


I was hoping someone would say it before me.
2012-12-07 12:31:59 AM
1 votes:
Pfft, lightweight

I was born with my guts inside out too, on Nov 13 1985 - Home before Xmas
With spina bifida too biatch!
AND IM A GIRL lolz
2012-12-06 10:20:37 PM
1 votes:
This is exactly why America has one of the highest costing Medical industries in the world. I'm sorry, but we shouldn't be funding the search for the fountain of youth. We can't beat nature, some humans are meant to die. Imagine if we gave every single American 4 million dollars to try and beat death, America would collapse in less than a year. Attempts like this, while great for the family, are really bad once extrapolated to the entire population.

I personally know a coworker who has kept his kid alive at the cost of over 500k a year. He knows the kid won't last til the age of 15. Asked, he says the money is being wasted.

At some point we need rational medical care. We simply can't afford these adventures in medicine. It is not sustainable.

This is the same as the average Medicare patient using over 100k in services extending their last year of life by a few weeks. It is unsustainable.

Stop being scared of death. It will get you eventually. Rational medicine please.
2012-12-06 08:16:24 PM
1 votes:
This is exactly why I'm pro-choice. This family chose to go through all the expense and medical procedures and that's bully for them, but no family should be *forced* to do the same if their kid has some horrible condition. I would absolutely terminate the pregnancy if it was me (same with conditions like spinal bifida or the condition where the fetus has no brain, whatever it's called.)
2012-12-06 07:27:07 PM
1 votes:

Peki: Question: Do kids who spend their first year or two in the hospital develop "normally" if you adjusted their birthday to be the day they left the hospital?


Actually, they can develop Reactive Attachment Disorder if they are severely ill for the majority of their first three years, and don't successfully bond with their parents because of this. Tiny people need to bond with big people before age three, or things go really, really wrong.

Mostly you hear of this with kids who are severely neglected, or bounced from caregiver to caregiver, or, you know, those pesky Russian orphanage kids, but sometimes it happens to very sick kids.
2012-12-06 07:22:15 PM
1 votes:

QT_3.14159: Three-Fifty: Lot's won't agree with me but that is a lot of pain and suffering to put a baby through. Surgery after surgery after surgery??? What kind of quality of life is that??? I would never do that to a child of my own, nor would I have wanted to suffer through two years of torture like that if I had been born with that kind of defect. "Life at any cost" is not always kind. "Life at any cost" can be extremely selfish. Sometimes it is more merciful and loving to let someone die. Yeah - I said it.

My first born had an ongoing seizure disorder that between the constant seizures and the drug induced stupor the treatment left him had a very poor quality of life. That being said, we tried for the 23 months he lived to figure out what was causing the seizures and get them stopped. Once his meds got balanced out, his quality of life was better, but because of the insane amounts of medication he was on, he was dealing with kidney stones and having a horrible, horrible time of it. At 23 months he died of an accidental overdose. I would have done anything to keep him here and I cannot imagine how different my life would have been if he had lived.

All that being said, when he was almost a year old, we shared a hospital room with another boy who had been born with his intestines outside his body. He was almost 2 and was getting his colostomy bag removed and his colon reattached for his (hopefully) final surgery. He was bright, interactive and a sweet boy. You should have seen the excitement in the room when his grandfather held up a dirty diaper with his first poop in it. To this day it brings tears to my eyes.

I was so envious of that family, because after their long ordeal, they WERE going to get to return to a normal life. in 20 years (hell it's been 16 now) he would have been a normal, functioning almost adult. I would advocate paying the $4M in medical bills every day if it means a decent outcome.

The money spent on my own child's medical bills I am less ...


My heart goes out to you QT.
2012-12-06 07:21:19 PM
1 votes:

jmsvrsn: I had a brother born with similar problems. He lived for one day. Back in the early 50's I don't think they even tried to save the child.


CSS:
Back in HS I dated the first person to survive this condition, born in 1967. AFAIK he's still doing fine.
2012-12-06 07:15:31 PM
1 votes:
2012-12-06 06:05:45 PM
1 votes:

Three-Fifty: Lot's won't agree with me but that is a lot of pain and suffering to put a baby through. Surgery after surgery after surgery??? What kind of quality of life is that??? I would never do that to a child of my own, nor would I have wanted to suffer through two years of torture like that if I had been born with that kind of defect. "Life at any cost" is not always kind. "Life at any cost" can be extremely selfish. Sometimes it is more merciful and loving to let someone die. Yeah - I said it.


Do you remember anything from when you were 1 or 2 years old?
2012-12-06 06:05:21 PM
1 votes:

Three-Fifty: Lot's won't agree with me but that is a lot of pain and suffering to put a baby through. Surgery after surgery after surgery??? What kind of quality of life is that??? I would never do that to a child of my own, nor would I have wanted to suffer through two years of torture like that if I had been born with that kind of defect. "Life at any cost" is not always kind. "Life at any cost" can be extremely selfish. Sometimes it is more merciful and loving to let someone die. Yeah - I said it.


You can see the pain and longing for death etched on her face in the photo/video accompanying the article.

Oh wait, that's joy and happiness, isn't it? Her clearly selfish parents must have forced her to do that.

/who are you trying to spare? The child? Or yourself?
2012-12-06 06:01:44 PM
1 votes:
Question: Do kids who spend their first year or two in the hospital develop "normally" if you adjusted their birthday to be the day they left the hospital?

My mom had a set of twins younger than me that ended up not making it (I remember since I used to visit them in the hospital), one of which was in the hospital for a year and a week before she passed. I always felt it a little unfair that such kids were measured against a yardstick that didn't seem to take that into account.
2012-12-06 05:48:35 PM
1 votes:
I spent 5 minutes debating trolling this thread. My soul is glad I decided against.
2012-12-06 05:47:23 PM
1 votes:
Sooooo, abour $4M dollars worth of surgery to save one person, when 12,000 children in Guatemala will die from diarrhea because we couldn't spend $50 to get them clean water.

Well done folks. You should be proud.

[starvingboy_vulture.jpg]
2012-12-06 04:12:44 PM
1 votes:
"Little girl with born liver and intestines..."

I'm not sure what that affliction is called but it sounds dreadful. To begin with, what do you name a baby liver?
 
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