Better late than never, I guess, but I would still have a hard time accepting the Children's Hospital of Philadelphia's apology as gracefully as Amelia Rivera's parents. The hospital initially denied the 3-year-old girl a kidney transplant because she is, in their words, "mentally retarded."
Amelia is not, in fact, "mentally retarded." She was born with Wolf-Hirschhorn syndrome, a genetic disorder which causes delayed physical and intellectual growth and development, seizures, and a variety of other issues; including, in Amelia's case, a life-threatening kidney condition.
Without a transplant, doctors expected Amelia to live another year at best. But when her mother Chrissy met with a doctor and social worker at CHOP, she was told that Amelia's mental delays made her "ineligible" for a transplant.
Understandably heartbroken and outraged, Chrissy blogged about the experience, which turned out to be an incredibly wise move. Her story got the attention of thousands of people, and their shocked, angry reactions got the attention of (surprise!) the Children's Hospital of Philadelphia. About time! In a statement, Vice President and Chief Medical Officer Michael Apkon offered the following explanation:
"As an organization, we regret that we communicated in a manner that did not clearly reflect our policies or intent and apologize for the Riveras' experience. While we can unequivocally state that we do not disqualify transplant patients on the basis of intellectual ability... this event underscores the importance of our responsibility to effectively communicate with families."
In other words, the hospital is sorry for being incredibly insensitive -- but they're not making any promises:
"Both the family and CHOP want to emphasize that no decision on Amelia's candidacy for a transplant has yet been made. Evaluation for possible transplant is a long and involved process. Decisions are never made in a single visit."
I understand this issue is a complicated one and there are no easy answers. But I probably couldn't manage that level of objectivity if I was Amelia's mom. That's why I'm so amazed by Chrissy and her husband Joe's response to the hospital's apology:
"Despite an unfortunate encounter a few weeks ago, we hold The Children's Hospital of Philadelphia in high regard. We've had a three year relationship with the hospital and are pleased with the care that Amelia has received."
I'm sure they're hoping the hospital will decide to give Amelia the transplant, and I hope they do. But if it doesn't go that way, I'm afraid that "apology" will end up being nothing more than too little, too late.
How would you react to the hospital's apology if you were Amelia's mom or dad?
Image via butupa/Flickr
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Comments (10)
The mother only told her side of the story. This is her view not neccesarily the truth. The hospital is gagged by HIPAA. She may have lots of medical problems toher then the syndrome and kidney issues. Sometimes when one part of your body is not functioning properly,it affects other tissues/organs.
We are not medical experts.
medical coder! i don't treat people, i just assign codes to the diagnosis and read all documentation to ensure that I have the correct codes.
spelling correction ^ "other" not toher
Another issue with the transplant from the original article, was that Amelia's mother had a donor for her. An adults kidney would not fit in.
I agree with the previous person, while sad and unfortunate if her medical conditions threaten her life or the kidney I can see them denying the transplant. I agree with the hospital sorry we roded it wrong but hey you may not qualify.
Obviously, if a doctor stated to the family that she was ineligible based on her mental capacity, that is wrong, and absolutely deserves an apology. However, as other posters have stated, we do not have the full story, and unfortunately, Amelia may end up being disqualified based on a number of issues regarding her health.
As for the author repeated using the term mentally retarded in quotes, and stating that Amelia is not mentally retarded, that is incorrect. Amelia is mentally retarded as a result of Wolf-Hirschhorn syndrome. According to the DSM-IV TR, mental retardation is a diagnosis of "significantly subaverage intellectual functioning" that also includes other defecits in function such as self care, interpersonal skills etc. While it may seem politically incorrect to use the term mentally retarded, since it is often thrown around as an insult, it is in fact correct to use the term in this instance.
@LauraRB...Just because a child has a mental handicap or other medical issues does not mean that they have no chance of survival. Yes, Amelia is going to die someday, but so is everyone else. She needs a kidney just as much, if not more than, the other people on the transplant list. She's just a little girl, and the doctors have given her a year to live IF she doesn't get the transplant. If she does, she could live a long, healthy life. It might not seem like much to you, but to that little girl and her family, even a few more years would be a wonderful gift.
I am absolutely appalled that a person would be denied a transplant because of something that is completely beyond their control. I could understand not giving an alcoholic a liver, or not giving a smoker a new lung, because those are CHOSEN behaviors and the consequences of those behaviors are what led to the need of the organ. But this little girl DID NOT CHOOSE to be born different. She didn't choose to have a mental handicap, and she didn't choose to have her kidneys stop working. She deserves just as much of a chance to live as everyone else. If that hospital refuses her the transplant, I hope her parents find a different one. I know for a fact that there is a hospital in St. Louis that will give kidney transplants to people with mental handicaps, because my boyfriend's little brother had one.
Wow, it's hard to believe in this day and age that a hospital of trained professionals would put it in terms like that. In some cases like this, it's more what the parents hear than what was actually said...
This is a sad, sad story but I support the hospitals decision. Transplant consideration is a hard topic.