(Closed) No kidney transplant for Amelia. Have you heard about this story?

posted 7 years ago in Wellness
Post # 3
Member
224 posts
Helper bee
  • Wedding: May 2013

@MrsFuzzyFace: I agree that this is awful…someone on a friends fb put this up…

 

yes its AWFUL! please don’t get me wrong, but i believe what happened was the doctor was just being a numb nut. If you look up the complications that can occur from the condition, thats the real reason why they denied her the transplant. Its a chromosomal disorder that has many complications. The doc probably just went in running his mouth, said something and didn’t explain. Either way, its a horrible story. Especially since the family is willing to donate one!!


Either way…it’s awful.

Post # 4
Member
13096 posts
Honey Beekeeper
  • Wedding: July 2010

While it is sad for this family, organ donation and determining who should recieve organs is not a simple process.

As the article stated:

“Some … feel they ‘ought to steward the scarce supply to save the most lives and the most years of life.’ About 113,000 Americans are waiting for organs; many die while waiting.”

The transplant committees / coordinators have to decide what candidates have the greatest likelihood of success and extended years of quality life as a result of recieving one of the limited supply of available organs.

I can understand why therefore that they may have to decide that a child with a genetic condition such as Wolf-Hirschhorn syndrome that typically leads to severe disabilities and short lives isn’t the best candidate.

Doesn’t mean it is easy for the family to hear though.  And not a decision I would want to be responsible for making.

Post # 5
Member
2559 posts
Sugar bee
  • Wedding: September 2010

I’m kind of empathetic to both sides. Transplant boards have to be impersonal, or else everyone would always be eligible for body parts – I can’t imagine having to make the decision of who gets one and who doesn’t. Especially if the person you have to decide against is a child with a chromosomal disorder – that’s like gambling either way, the world hates you if you say no, if you say yes the organ is potentially a waste if the girl dies from her disorder. But as her parents, I’d do exactly what this woman did and fight for my child, no matter what her physical or mental status was.

  @misslyn86: Do you think the donation of sibling body parts is also a little murky? Have you read My Sister’s Keeper? Obv it’s fiction but I thought it did a nice part of bringing up the problems/positives of having children who donate to other children and how difficult that can be ethically. I think it’s a really really grey area, when your kids aren’t of age to decide themselves.

Post # 6
Member
7587 posts
Bumble Beekeeper
  • Wedding: December 2010

I think the situation stinks. I believe that if a family member wants to donate, then they should be able to do so, with no issues.

However, I do understand the thinking about giving the transplant to the candidate that it will have the most success with. I have a family member who has been denied a transplant based on a condition he has, and although at first it made me very upset, I realized that for him, it would be a temporary fix, and more than likely he would need to have multiple transplants in his lifetime. Where there may be another child who could have a long, healthy, productive life with just one transplant. 

Either way it’s heart wrenching.

Post # 7
Member
2559 posts
Sugar bee
  • Wedding: September 2010

@Mrs.KMM: This. Relatedly, I just had my uncle-in-law need a kidney/liver transplant from hepatitis he didn’t know he had – the transplant board initially rejected him because he’d drank a lot of beer in the preceding months, and that’s a rule – no screwing up your body with drugs when you want a transplant. His family just raged against the transplant board, but waht can they do? They have to make the smartest decision. Thank God they finally realized that as an emergency pilot who just didn’t know he had a disease, he wasn’t an alcoholic and was able to get the transplant on the understanding that he’d quit drinking subsequently.

Post # 8
Member
1212 posts
Bumble bee
  • Wedding: June 2012

@Mrs.KMM: Exactly. Though everything about this is sad, it would be even sadder to give her a kidney that could have saved somebody else’s life, only to have her die anyway.

Edit: I didn’t see that the family had offered to donate. In this case, they should have been allowed to do it. The only reason I can see against it is if she is so weak already that she couldn’t survive the surgery.

Post # 9
Hostess
11166 posts
Sugar Beekeeper

Surface level it sounds horrible and quite heartless.

With medically related issues like this there is always more to the story so I would love to get more information on the doctors point and view. I am also not familiar with her disorder and would think that it is probably another factor in the decision.

Post # 10
Member
1109 posts
Bumble bee
  • Wedding: September 2011

I agree that transplants should be given to those who can benefit from them the most. This child MAY live past the age of 5 with the transplant. The odds just aren’t good enough to justify given her an organ that could save somebody’s life. I don’t think it’d fair at all to say she’s not getting the kidney because she’s mentally retarded. She’s not getting the kidney because her prognosis is poor with or without it. It’s a terrible thing for the family to hear I’m sure, but it sounds like this little girl could benefit more from palliative care than multiple serious surgeries.

Post # 11
Member
1458 posts
Bumble bee
  • Wedding: January 2015

I must admit, I agree with the PP that say although it is a sad situation, I fully understand and support why the decision was made.  Life really just isn’t fair sometimes, and when it comes to organ transplants I think striving to add as many healthy, productive years of life as possible is the best way to go.

Post # 13
Member
4693 posts
Honey bee
  • Wedding: October 2013

@MrsFuzzyFace: The things about this that really bother me are the fact that her family is willing to supply the kidney and the hospital still refuses to do the surgery

This is the part that I don’t understand.  If my sister needed my kidney, I would donate my kidney to her.  That doesn’t mean my kidney is up for grabs for anyone else, just her, so how is not allowing me to donate my kidney to her preventing someone else from receiving a kidney from someone else?  My kidney is available expressly to my sister.

Post # 14
Member
191 posts
Blushing bee
  • Wedding: June 2012

This is a sad situation for this family. As others have pointed out, there is a national organization (United Network for Organ Sharing) that allocates organs and decides which patients are candidates for transplant. It sounds like this child is not a candidate given her profound mental disability and limited life expectancy. It also sounds like, according to the parents’ account, the transplant physician did not share this information with them in a compassionate manner. There are also many reasons why the parents may not be suitable kidney donors: size mismatch, incompatible blood type, health problems in the parents, etc.

Post # 15
Member
5797 posts
Bee Keeper
  • Wedding: May 2011

@MrsFuzzyFace: But they can’t make decisions based on the exceptions. If 5 out of 100 people with this disorder make it to adulthood that isn’t enough for people making the transplant decisions.

I’m curious about why the hospital refuses to perform the transplant if the family is offering their own organs? Is it a liability thing?

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