Should a child with an intellectual disability be denied an organ transplant?

[Anonymous]

Have you seen this story? http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

Little girl is three, has a genetic syndrome that includes as a symptom a pretty significant cognitive disability, needs a kidney transplant within six months to a year to save her life. CHOP (Children's of Pennsylvania) docs tell her family that because she is "mentally retarded" she will be ineligible, not just to be on a donor list, but also to receive a kidney transplant from a donor in her own family. The doctor reportedly says things to the child's own mother like, "she is not eligible because of her quality of life, because of her mental delays," and "I have been warned about you, about how involved you and your family are with Amelia." He says this to her mother! Can you imagine?

I don't know how this woman kept even a modicum of composure. They didn't want to even let her own family donate a kidney to save her life because she is "mentally retarded."

Horrible!

[Anonymous]

awful

[Anonymous]

The girl's situation is very sad. The hospital may be deciding how to spend limited resources. If the family could pay I assume the answer would be different.

[Anonymous]

The disabled community stepped up and advocated on behalf of this family. the little girl is now on the transplant list.

[Anonymous]

You left out a big, important detail. She has a fatal condition. So, yes, I understand where the hospital is coming from. It's not worth risking someone else's life to give this girl 6months-1 year of poor quality of life. Her parents need to enjoy their time with her and not pursue invasive, temporary solutions.

[Anonymous]

Anonymous wrote:You left out a big, important detail. She has a fatal condition. So, yes, I understand where the hospital is coming from. It's not worth risking someone else's life to give this girl 6months-1 year of poor quality of life. Her parents need to enjoy their time with her and not pursue invasive, temporary solutions.

Her condition is not fatal if she gets a transplant. You misinterpreted something.

[Anonymous]

The WaPo reports that about half of transplant facilities take these types of questions into account. It's not obviously unethical to me.

[Anonymous]

Anonymous wrote:

Anonymous wrote:You left out a big, important detail. She has a fatal condition. So, yes, I understand where the hospital is coming from. It's not worth risking someone else's life to give this girl 6months-1 year of poor quality of life. Her parents need to enjoy their time with her and not pursue invasive, temporary solutions.

Her condition is not fatal if she gets a transplant. You misinterpreted something.

No, its not a permanent fix. She will die organ or not.

[Anonymous]

Anonymous wrote:You left out a big, important detail. She has a fatal condition. So, yes, I understand where the hospital is coming from. It's not worth risking someone else's life to give this girl 6months-1 year of poor quality of life. Her parents need to enjoy their time with her and not pursue invasive, temporary solutions.

Bite your tongue. Miracles can happen. You can never predict when they will happen. But if you take away the opportunity for one to manifest, she'll never have a chance.

[Anonymous]

Anonymous wrote:The disabled community stepped up and advocated on behalf of this family. the little girl is now on the transplant list.

And this is not right, she is not on the "transplant list." Nor did her parents ever seek to make that specifically happen. They wanted and still want to use a LIVE FAMILY donor. The hospital wanted to deny them that because the girl is mentally retarded.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:You left out a big, important detail. She has a fatal condition. So, yes, I understand where the hospital is coming from. It's not worth risking someone else's life to give this girl 6months-1 year of poor quality of life. Her parents need to enjoy their time with her and not pursue invasive, temporary solutions.

Her condition is not fatal if she gets a transplant. You misinterpreted something.

No, its not a permanent fix. She will die organ or not.

Where are you seeing that she will die in six months to a year EVEN IF she gets a transplant? That was not my impression at all. She WILL die in six months to a year if she doesn't get a transplant.

[Anonymous]

Anonymous wrote:The WaPo reports that about half of transplant facilities take these types of questions into account. It's not obviously unethical to me.

So you think we should triage life saving procedures due to cognitive ability? Nice. Well, what's your IQ. I wanna make sure you don't get any life saving treatment that might possibly mean someone smarter gets passed up. (not even addressing the fact that the family wants to use a live donor in their own family.)

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:You left out a big, important detail. She has a fatal condition. So, yes, I understand where the hospital is coming from. It's not worth risking someone else's life to give this girl 6months-1 year of poor quality of life. Her parents need to enjoy their time with her and not pursue invasive, temporary solutions.

Her condition is not fatal if she gets a transplant. You misinterpreted something.

No, its not a permanent fix. She will die organ or not.

Where are you seeing that she will die in six months to a year EVEN IF she gets a transplant? That was not my impression at all. She WILL die in six months to a year if she doesn't get a transplant.

I read other articles...

http://www.huffingtonpost.com/lisa-belkin/denying-transplant_b_1207630.html

"Dr. Kurt Hirschhorn, a pediatrician and geneticist at The Mount Sinai School of Medicine, and one of the two researchers who identified Wolf-Hirschhorn Syndrome in the early 1960s. He was also the head of the Mount Sinai Hospital Ethics Committee for 30 years (and, as it happens, he"s been a mentor to my husband at Sinai, and we consider he and his wife our friends.) Kurt read Chrissy's story and I asked him, "Should Amelia be put on the donor list for a kidney transplant?:

No, he said."

...

"he would want to make sure that a potential living donor fully understood the personal risks of such a donation, and also understood that Amelia's life would be prolonged, but not saved, by the transplant"

[Anonymous]

This is some info about the syndrome this little girl has.

Many individuals who have WHS survive to adulthood. Universally, children with WHS have severe or profound developmental retardation, however, there are many affected individuals who are able to walk and some that are able to talk in short sentences. It is evident that many patients seem to proceed farther than was previously thought possible. The actual lifespan for individuals who have WHS is unknown, although there are several individuals who have WHS who are in their 20–40s.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:You left out a big, important detail. She has a fatal condition. So, yes, I understand where the hospital is coming from. It's not worth risking someone else's life to give this girl 6months-1 year of poor quality of life. Her parents need to enjoy their time with her and not pursue invasive, temporary solutions.

Her condition is not fatal if she gets a transplant. You misinterpreted something.

No, its not a permanent fix. She will die organ or not.

Where are you seeing that she will die in six months to a year EVEN IF she gets a transplant? That was not my impression at all. She WILL die in six months to a year if she doesn't get a transplant.

I read other articles...

http://www.huffingtonpost.com/lisa-belkin/denying-transplant_b_1207630.html

"Dr. Kurt Hirschhorn, a pediatrician and geneticist at The Mount Sinai School of Medicine, and one of the two researchers who identified Wolf-Hirschhorn Syndrome in the early 1960s. He was also the head of the Mount Sinai Hospital Ethics Committee for 30 years (and, as it happens, he"s been a mentor to my husband at Sinai, and we consider he and his wife our friends.) Kurt read Chrissy's story and I asked him, "Should Amelia be put on the donor list for a kidney transplant?:

No, he said."

...

"he would want to make sure that a potential living donor fully understood the personal risks of such a donation, and also understood that Amelia's life would be prolonged, but not saved, by the transplant"

What's the difference between prolonging and saving her life? What if it prolongs it by 5 or 10 years? Does that make it worthwhile? We might reasonably look at lots of people who receive transplants as having their lives "prolonged" rather than saved. Just because this Hirschhorn doctor feels the same way as the docs at CHOP does not mean this belief is moral.

AND the parents were not so alarmed until they were told not just that she wouldn't be put on a list, but also that they couldn't have a family member donate her a kidney either. THIS IS WRONG. For fucks sake people. It's eugenics.