Sick Girl Picks Home Over Heart Transplant

13-Year-Old Brit With Leukemia Refuses Transplant To Spend Her Remaining Time At Home

(AP)  A 13-year-old British girl who has undergone nearly a dozen surgeries in her young life has refused a heart transplant operation - a decision that may ultimately lead to her death.

Hannah Jones, who was diagnosed with leukemia and later a heart condition, told her parents and medical authorities that she would rather spend her remaining time at home than in the hospital. Health authorities have ceded to the decision after interviewing the girl.

"I've been in hospital too much - I've had too much trauma," Hannah Jones told Sky News on Tuesday. "I don't want this, and it's my choice not to have it."

Hannah was diagnosed with leukemia when she was 4 years old. Chemotherapy put her into remission but doctors then discovered she had cardiomyopathy, a serious disease where the heart muscle becomes swollen and sometimes fails.

The girl's story surfaced when parents complained about hospital officials who sent a social worker to interview the girl about her choice.

The family received a telephone call saying the hospital would take legal action if they didn't bring Hannah to hospital, said her mother, Kirsty Jones.

"They phoned us on a Friday evening and said that if we didn't take her in they'd come and take her. We still refused to take her," she said.

Hospital officials said it is standard procedure to make sure both the child and their parents understand the consequences of any medical decision.

"Clearly, the welfare of the child is paramount," said Sally Stucke, a pediatrician with the Herefordshire Primary Care Trust where Hannah was receiving treatment. "Pediatricians will always consider the child's best interests at all times and this would include the child's medical, emotional and psychological well-being."

"No one can be forced to have a heart transplant," she added.

Dr. Tony Calland, who chairs the British Medical Association's medical ethics committee, told BBC radio that a 13-year-old like Hannah, supported by her parents, should be "perfectly capable" of making such a decision.

"Decisions to refuse life-prolonging treatment are always extremely difficult and emotive," he said. "What is paramount is that decisions are made in the best interests of the patient. Where consensus cannot be reached between doctors, patients and family, then it is only appropriate that the courts intervene to act in the best interests of the patient."

Dr. John Jenkins, a pediatrician and chairman of Britain's General Medical Council standards and ethics committee, said children who have lengthy illnesses become "experts in their own condition quite early in life."

Heart transplants are risky operations on any patient - and those risks increase with young people who have additional conditions like Hannah's leukemia.

The transplants often require patients to be on lifelong anti-rejection medication to prevent their body from attacking their new heart. The medicines often have side-effects, which make the body more susceptible to dangerous infections.

"I just decided there were too many risks, and even if I took it there might be a bad outcome," Hannah said. "There is a chance that I may be OK, and there's a chance that I may not be as well as I could be, but I'm willing to take that chance."

[vcofreason]

This sweet young lady is a brave and mature soul. My heart goes out to her as she makes such a grown up and scary decision. I commend her for taking up for her own life. Just because we are not old enough to sign a contract doesn''t mean we don''t know what is best for us.

[Meg003]

demswin08

Oops! I was wrong. You''re only compassionate when you aren''t being a political hater.

[Meg003]

demswin08

May you have the best possible outcome for your health circumstances, and have many years ahead. It sounds as though you have always been a compassionate and caring person to be around. I hope you are surrounded and comforted in joy and love by similar folks.

[zwaggsy]

To momofdaisy.

I think you''ll find all this treatment was being done on the NHS in which case it''s all free!

[momofdaisy]

If I were to be diagnosed with a life threating and fatal disease, I would refuse treatment too. The medical profession is too busy making a buck for themselves. I think truly that they WANT to make money on hopeless cases.

I reserve my right to refuse treatment. I am a single mother and have grandchildren I would like to leave something to, as far as money. I am not going into debt or the poor house to try to save my life, if my situation is hopeless.

More doctors need to explain that to families and quit taking their money, when there is no hope.

[momofdaisy]

Hannah, follow your heart.

[momofdaisy]

God bless you, Hannah. You are brave to stand up to what you believe in. Stay at home, darling. God Bless you and your family. Your voice should be heard.

[ducksrock4]

""Caligola was responding to the negative comments posted by DaVicar1 and was DEFENDING the young girl. "" (posted by meg001)

My apologies to Caligola... there were no apparent QUOTES in the message I saw to distinguish Caligola''s comment from that of the true author.

I think it''s rather novel to defend someone by offering to vomit on the offender''s photos, though.

I redirect my earlier response to DaVicar1, the true author of the repulsive comment.

I might add to DaVicar1 (now that I know where it all started...): you are indeed a dork. Each of the comments you posted regarding this story are inflammatory and intentionally inciting anger. Just hanging around to stir things up, aren''t you?

Well, we all need a hobby, I guess. Too bad yours is so mean-spirited.

[ken-m-2009]

My children were born at home, and they were schooled at home. At 22 and 20 years old, they are the most balanced, compassionate and social creatures I know. Wherever they wish to die, I respect that. I find some of the comments posted here to be unbelievably bigoted. This girl Hannah has obviously outlived childishness; she has a very good heart indeed, and wisdom.

[Meg003]

Caligola was responding to the negative comments posted by DaVicar1 and was DEFENDING the young girl. It was the dreadful poster whose photo Caligola requested, and the comments about compassion were in QUOTES because they were quoted from DaVicar1''s post.

[ducksrock4]

Caligola (I can''t believe I''m actually responding to you): your words are stupid. No, they are ignorant. No, really, they are ludicrous.

You are offering to vomit on pictures of a 13 year-old leukemia patient because she has lived this long thanks to previous medical intervention which she is now choosing to have withheld?

I''m searching my dictionary for words to describe your comments, but honestly, words are inadequate to fully describe the disgust and disdain your comment evokes. I''d call you a dork, but that wouldn''t quite capture the essence of what seems to be your true nature.

I can only guess that you had someone in your life who needed the type of medical treatment that Miss Jones had received, but your loved one did not receive the treatment or did not survive for one reason or another. I''m guessing that you commented from a place of pain in your heart.

That would be understandable, but perhaps you could have vented your hurt in more productive ways --other than a suggestion that Miss Jones life is wasted, or than by defiling her picture.

[ducksrock4]

Caligola (I can''t believe I''m actually responding to you): your words are stupid. No, they are ignorant. No, really, they are ludicrous.

You are offering to vomit on pictures of a 13 year-old leukemia patient because she has lived this long thanks to previous medical intervention which she is now choosing to have withheld?

I''m searching my dictionary for words to describe your comments, but honestly, words are inadequate to fully describe the disgust and disdain your comment evokes. I''d call you a dork, but that wouldn''t quite capture the essence of what seems to be your true nature.

I can only guess that you had someone in your life who needed the type of medical treatment that Miss Jones had received, but your loved one did not receive the treatment or did not survive for one reason or another. I''m guessing that you commented from a place of pain in your heart.

That would be understandable, but perhaps you could have vented your hurt in more productive ways --other than a suggestion that Miss Jones life is wasted, or than by defiling her picture.

[a-thinker]

Caligola''s response is so awful, I feel sorry and sad for her. That anyone would stoop to using a word like "vomit" in a story about a girl and her heart condition is beyond imagination. Caligola must be a very angry person.

Go Hannah!

[kansas1946]

Compassion? Like she had compassion for the dozen or so operations that SOMEONE ELSE could have benefited from? Someone who wasnt gonna give up just to spend a few weeks at home?

She needs to get a little compassion, and apologize to those Doctors for wasting their time.""

Send me your picture so I can VOMIT on it.

Posted by Caligola
***********************************

I am not sure how to respond to your comments. They are so outrageous that the must be placed just for shock value. Having said that, I will say, that this child didn''t "choose" those earlier procedures. Those were chosen for her by doctors and her parents. Probably because of all of those procedures and how she has had to live, she matured early and is now in the position to make the decision herself. That you would speake so hatefully about a child just makes me feel sorry for you. Karma is a b**ch.

[FHMullane]

Since when can''t a person refuse medical treatment, particularly when doctors agree that the proposed treatment may not have a good result? Is this different cause she is 13? She is showing maturity beyond her years.

AND for those claiming she wasted medical treatments to date..... Not so. The treatments she got brought her to this point. AND she seems to be having a decent quality right now... That is NEVER a waste.

Wake up and just use your head.

[susanhelit]

It''s her choice - a heart transplant, with her other health issues is risky. It may be time to say she''s done, enjoy her time, whatever it will be. A heart transplant could kill her, as well as save her - this is a choice only she can make.

Her other operations weren''t wasted - they kept her going from 4 years old to 12 - but finding out she had a heart problem on top of the leukemia - obviously she just had enough, and wants some time in her life living outside of the hospital.

[cdfoxtrot5]

""Compassion? Like she had compassion for the dozen or so operations that SOMEONE ELSE could have benefited from? Someone who wasnt gonna give up just to spend a few weeks at home?

She needs to get a little compassion, and apologize to those Doctors for wasting their time.""

Send me your picture so I can VOMIT on it.

Posted by Caligola

You obviously have little understanding of the limitations of modern medicine. The girl may have benefited from the previous medical procedures. A heart transplant is a highly risky operation, however. And I suspect you have no idea what they are talking about when they refer to suppressing the immune system so that the new organ isn''t rejected. That, in itself, is highly risky. The girl has not wasted anyone''s time, and has made an informed decision. It is, after all, her life.

[d33pthroat1]

She can be saved through prayer.
---- Posted by gop_will_Win

The power of prayer ... laughable
---- Posted by peacedreamer

I used to not believe in prayer. I still don''t - to a large extent. But, I no longer think that it is something to be laughed at - at least when it comes to health.

I think, in times of need, praying can help from a psychological perspective. Knowing that a higher power might help can bring hope and emotional support to people. Sometimes, this emotional well-being can help people psychosomatically just like a placebo does.

[Meg003]

The comments on this story point out a desire we have to believe that doctors can always "fix" us if we just keep a positive outlook. Some of these posters are convincing themselves that they are different, somehow invulnerable, to a terminal illness.

I have heard that attitude before when people say, "I just couldn''t handle that!" in a dismissive tone, as though they know some tough medical problem will not hit them or their loved ones if they cannot handle it.

It''s a natural denial of the fact that we all share the inevitability of death and loss, but it leads to separating people into "us" and "them" in an effort to retain a level of comfort.

[ngobama]

This story reminds me of the book/movie INTO THE WILD, where a young man decides its a good idea to go into the wilderness to "find himself" while in the process ignoring to consider the hurt that would inflict his family (parents and sibling) when he died alone because he refused to get a map (which would have helped him to spot a nearby rescue station.
However, these incidences are lessons about our complicated lives and which point of views to consider during difficult situations: Hannah''s, parents'' or the doctors''? Is common sense enough to judge this alone or emotional/ psychological trauma or both?
I will say a little prayer for Hannah tonight. She is in a tough predicament!