July 2009 Weddings
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Let's discuss
I saw this article today. I thought it would be a good one to discuss.
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Re: Let's discuss
I really feel like we're not getting the whole story on this. CHOP is an excellent hospital, and doctors can refuse/decline to treat for any reason.
The Mom says she wasn't asking for the girl to be put on the waiting list, that they were going to find there own donor. As in, they hadn't done it yet. Those things can take quite a bit of time if the immediate family isn't a match. And if the girl only has 6 months, they're likely cutting things quite close.
I'm having my trouble wrapping my head around why Mom is blogging about it/talking to the news instead of finding a new doctor and finding a donor. Just because one doctor says no doesn't mean they all will. I'm sure she could find someone who would.
It sort of feels like an excuse for a publicity stunt so she can find a new doctor/donor/raise money for the kid without any effort on her part.
Kate's Recipe Box || Relatively Bookish
I hadn't thought of it that way, but I can definitely see your point.
As a mother I would be outraged by someone telling me that. However, I still don't see why prolonging someone's life is not worthy of being put on the list. That also seems kind of unfair to me.
I agree with Kate. I completed one of my rotations at CHOP and I am finding this story difficult to believe after having been a part of the "team." They are one of the top children's facilities in the world and are not going to discriminate against a patient with multiple disabilities. There has to be more to the story than this article.
I agree with Kate. There is something we aren't hearing, and it does feel to me like the mom is trying to cause drama in order to have easy help finding a donor/funding for her child.
SIL#2 has the same genetic disorder (though not as severe of a case and so far, no organ issues) and as much as it would break my heart, I can understand not accepting her for a donor wait list because her life expectancy is unknown/not high, and the anti-rejection medications may interfere with the medications for her condition anyway.
Wolf-Hirschhorn Syndrome can be the cause of other abnormalities in organs. I am more inclined to believe that other health issues she has might be the reasoning for not placing her on an organ wait list, not the mental retardation factor of the syndrome. It makes zero sense that the hospital would refuse to perform the surgery if the family found their own donor. And if they did, then just find a new hospital. I don't believe that part of the mother's story. Really. I see her public outrage as a way to help with finding a donor.
And she should try to find a donor, one that is willing and understands the donation will only prolong, not save, the child's life. And sure she should raise awareness in the press to help her find one. But not by bashing a hospital.