Olan
Pearl Clutcher
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Post by Olan on Oct 28, 2015 10:59:06 GMT
This Broke My HeartAs someone grappling with the realness of God the biggest thing that stood out for me in this story has to be the comfort the little girl must feel in the idea of heaven and that God loves her more than her heavenly mother and father. If I have a sick kid we'd be fucked. I'd be angry thrashing in the corner somewhere cursing God. I'm sure the discussion will lean more toward the end of life decisions and the laws that prevent people from having total autonomy and of course the age of the child. Bioethics is a pretty interesting topic. Too bad I'm 30 and already on the hook with Sallie Mae or I'd consider a career change.
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Post by jenjie on Oct 28, 2015 11:18:48 GMT
Olan your link leads right back to this thread.
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Olan
Pearl Clutcher
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Post by Olan on Oct 28, 2015 16:44:58 GMT
In my car..it's a link to a CNN story about a 5 year old children with a rare disease. Her parents say she has chosen to die at home if she becomes ill again
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Post by lumo on Oct 28, 2015 16:55:37 GMT
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Post by katlady on Oct 28, 2015 16:58:21 GMT
I read the story earlier and it brought me to tears. So sad.  Especially when I read about her closet full of princess outfits that she wears everyday. The little girl has an incurable disease and is getting worse. I don't see this as any different than in-home hospice care From the article, it does state that she has a nurse. I would rather pass away in my home than in a hospital room. |
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brandy327
Drama Llama
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Post by brandy327 on Oct 28, 2015 17:05:32 GMT
I read the story earlier today too. It's heartbreaking. As a parent, I cannot even imagine how her parents feel, let alone that gorgeous baby.  I think everyone should be offered the opportunity to die with dignity no matter the age. Can she fully understand? I imagine she understands more than you would think. She's known way too much pain and suffering in her short life. The doctors have said that she WILL die, it's just a matter of when. I would like to think I'd give my child the choice...but it's definitely not something I can say 100% since it's hard to conceive the situation. Thoughts and prayers for her and her family. |
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Deleted
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Apr 27, 2024 10:28:00 GMT
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Post by Deleted on Oct 28, 2015 17:11:40 GMT
This story is hard for me. The disease she has (Charcot Marie Tooth) is a disease a friend of ours has. Our friend's life is hard, but she's an adult, was married, and has a child. She went to college, she has a career, she lives independently, etc. Her condition has not kept her down. She lives with pain, and she's fragile, but she's alive, she's a mom, and she has joy. So part of me wants to say "Hang in there sweetheart. Your life doesn't have to end this way" but I don't know if this girl's case is worse than our friend's or what. I just can't imagine the gravity of a situation like that, or what I would do as her parent.
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DEX
Pearl Clutcher
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Post by DEX on Oct 28, 2015 17:27:20 GMT
As a parent, I think that 99.9% of us would want to give her the best shot. It would break my heart to be judged by strangers who haven't met my daughter and don't have the knowledge of being a neurologist.
On the other hand, how is this different from parents who allow kids in middle school to fly solo or sail solo around the world? Those 2 instances did not end well.
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Post by leftturnonly on Oct 28, 2015 17:39:29 GMT
I've been in the hospital with two very ill infants, both of whom had prognoses of very healthy lives ahead of them but who would have died without immediate modern medical treatment.
The hospital is a hard place to be when you're so young.
This child has gone through torture already just to stay alive with the prognosis that each time she will get ill it will be worse until nothing they can do will sustain her and she will die.
Her parents understand better than most what the technicalities of her disease and her treatments are. They know what kind of pain she has endured and what pain further treatment would create only to prolong her life a tiny time longer.
Who can blame any one of them for wanting this little one to be in her warm, loving home surrounded by the people who love her most over dying in a cold, clinical hospital separated from so much?
We don't allow our pets to suffer when there is nothing left to be done. I don't understand why there is even a question of right and wrong here with this little girl.
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Post by rst on Oct 28, 2015 17:54:39 GMT
The only thing this family is doing that is controversial is that they have included their young daughter in the conversation and decision making process as to where she will be cared for and treated. As described in the article, she's not choosing to die vs. live; she's choosing to spend her final days at home rather than in a hospital -- but that wouldn't make for a great headline or get a lot of web hits. Palliative care at home is not lesser care -- it may have some limitations, but it also has huge benefits, including lesser chances of infection.
Her family sounds very appropriate and thoughtful to me. Many families have been making choices like this, for the same reasons, for a very long time. Pediatric palliative or hospice care at home is a wonderful thing.
This story is getting some negative attention because the child is 1) young (but in my experience, kids that young are capable of very thoughtful and nuanced choice making) 2) verbal (so she's actually communicating her thoughts and choices-- plenty of parents of nonverbal kids share information about their health status with those kids, they just don't have heart-rending conversations to blog about 3) apparently has a very severe case of a condition that is not always life limiting -- so it's tempting for people to arm-chair assess or compare and 4-- the biggest one -- they've chosen to blog and put it out there on the web. That's where I have mixed feelings. On the one hand, by sharing their own experience, they can help others facing the same issues, trigger dialogue in the general public about end of life issues, create a community of support for their family. On the other hand, I feel very uncomfortable when private, volatile, difficult situations are launched into the public -- what about their son, as he grows up? How will he feel about having his family story, his face photographed, his emotional journey, all put out there in public?
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Especially when I read about her closet full of princess outfits that she wears everyday. The little girl has an incurable disease and is getting worse. I don't see this as any different than in-home hospice care From the article, it does state that she has a nurse. I would rather pass away in my home than in a hospital room. 
I think everyone should be offered the opportunity to die with dignity no matter the age. Can she fully understand? I imagine she understands more than you would think. She's known way too much pain and suffering in her short life. The doctors have said that she WILL die, it's just a matter of when. I would like to think I'd give my child the choice...but it's definitely not something I can say 100% since it's hard to conceive the situation. Thoughts and prayers for her and her family.
