I thought about putting this in the Pit, but upon reflection thisis less fodder for Recreational Outrage than reason for Numberless Tears.
That poor baby. Her poor family.
What a tragedy. If all life ever has been for someone is pain, it’s not hard to understand why they wouldn’t want to continue. 
I suport her having the freedom to make that decision. After 9 years of dealing with illness, it’s all she really knows. I understand the government entering to make sure that there isn’t coercion involved in her decision, but beyond that, it really is her choice. There isn’t a point in forcing limited medical resources on someone who’s decided to refuse them. She seems to know what it’s all about (informed consent) and in the end, it’s her and her family’s choice (patient autonomy).
The sad part is that a 13-year-old girl is dying, period. I agree with that :(.
Thank God she lives in the UK (and not, say, Florida) so she’s unlikely to become a pawn of pro-life-at-any-price politics. (Terry Schiavo, anyone?)
It’s very, very sad that she’s decided to die so young, but considering all the pain she’s been through (not to mention her future life of anti-rejection meds and other issues) I fully support her decision, and I pray that her parents fully support her decision as well.
Sometimes, it seems like Life just doesn’t want you here.
Dealing with children who have serious chronic illnesses is truly a Battle of Unnumbered Tears.
Absolutely.
Children under 18 in the UK can give informed consent for medical treatment (or non-treatment) if deemed to be competent, which imo is a fantastic rule. There can be a conflict of interest between parents and children (e.g. right to die or even just things like contraception) which has to be addressed in a manner that protects the child. Children are not the property of their parents after all.
I’d applaud your recognizing my allusion if the thread weren’t so depressing.
I, too, am happy this isn’t happening in Florida.
We’ve had our own personal Nírnaeth Arnoediad going on for 17 years now. We continue to fight the Long Defeat.
I don’t expect to see the Break of Thangorodrim nor the unforging of the Ring.
But we still fight.
For now.
And I respect the young lady in the OP’s decision to stop fighting.
I read about this earlier today, and could only admire the strength of this beautiful young lady, and the clear-headedness of her family.
Oh, come one, this isn’t nearly the same. If Terry had been able to speak, I’m sure there would have been no controversy about her wishes.
In this case, how hard it must be for her parents to give up as well. I’m glad the hospital backed off. Here’s hoping she can enjoy whatever time remains to her.
Perhaps fitting that her name, Hannah, means Grace of G-d.
I hope whatever time she has left is spent in love and joy.
We’re in more or less the same situation in my family right now. It’s very very sad, and I sympathize with that family, but I respect the girl’s decision. We should all be able to make that choice if we feel the need. It’s very brave.
Who’s Terry? What would have happened in Florida?
Terri Schiavo was in a coma in Florida. To summarize, her husband, 8 years into the coma, wanted to have her feeding tube removed so she could die, and claimed that she would not have wanted to be kept in such a situation. Her parents disputed this and filed suit. Cue years of lawsuits, accusations, the government intervening, etc., etc.
One notable distinction is that the patient in this case is awake and able to express her feelings about her medical care.
Bless her and keep her free of pain.
Almost every really hard decision in my life since parenthood has been one in favor of a child (I have three)'s long-term interests against their immediate wishes. I tend to favor the former over the latter, which may put me in the minority here but does manage to preserve the opportunity for a mature and considered choice later, at the cost of an emotionally appealing, vicariously satisfying, posture now.
It sounds as if the girl and her family have decided that modern medicine is not in their best interests, which is a decision probably within their rights but outside their competence, and which had best be implemented, if at all, right now.
I’m not sure what you’re saying “should be implemented” here.
It’s a tragic story, especially for the parents, but I’m glad that they’ve decided to support their daughter in her decision. This would be even more tragic if they, or the hospital, decided to force the procedure against Hannah’s wishes. She may not have a lot of time left, but at least she’s spending it in a way that makes her happy.
(On a side note, anyone know what happened to the JH teen in western Canada whose father permitted her to have blood transfusions against her wishes?)
They haven’t rejected modern medicine, just this specific procedure. It’s not (from what I can tell) a straight-forward “have the transplant or die” scenario – Hannah’s cardiomyopathy may well shorten her life and lessen its quality, but a heart transplant is a high-risk solution which (even if successful) would have its own impact on her life quality. It seems to me that she and her family are more than competent to make a decision on that basis.
Same boat, I have 4 of my own
I disagree. Did you read the article?
- There is some chance she will be (relatively) OK
- After a heart transplant, she will likely require anti-rejection drugs for the rest of her life, which carries a significant chance of serious infections / complications later.
Sounds like she and her family weighed the risks and made a competent, informed decision.