The parents of a 3-year-old New Jersey girl who claim she's being denied a kidney transplant because of her mental disabilities said their problems may be with one doctor, and not The Children's Hospital of Philadelphia."It's one doctor who's never seen us who is making this call," Joe Rivera told The Associated Press on Wednesday. "We've had a great experience with CHOP. We're not against CHOP, but maybe something needs to be changed. One guy tarnished their reputation.
Rivera, 39, and his wife Chrissy plan to meet with hospital officials next week, amid a growing online furor that has experts warning the situation may be much more complex than many realize. The hospital has not commented on the child's case, citing patient confidentiality laws, but acknowledged the online discussion and said on its Facebook page that "we hear your concerns."
Chrissy Rivera posted a blog entry last week that described an encounter she claimed happened at The Children's Hospital. She and her husband were there to discuss treatment for her daughter, Amelia, who was born with Wolf-Hirschhorn syndrome, a rare genetic defect that can cause physical and mental disabilities. Amelia will need a transplant in six months to a year.
The researchers added that previous controversies over mental disabilities and transplants led the Joint Commission on Accreditation of Healthcare Organizations to express concern that many people with disabilities are "denied evaluation and referral for transplantation."
Rivera's blog noted that doctors said Amelia won't need a transplant for six months to a year.
Some experts said that if Rivera's claims are accurate, the hospital's actions are very disturbing.
"Everyone deserves an equal chance to these organs, regardless of your mental capacity," said Charles Camosy, a professor of Christian Ethics at Fordham University.
Camosy said that while it's true that there are shortages of kidneys and other organs, the criteria used to make transplant decisions "should not ever devalue those that are mentally disabled."
"This is a growing movement that transcends liberal or conservative that says this kind of life, because it's so vulnerable, it deserves special protection," he said.
Whatever the medical details of Amelia's situation, her mother's blog captured the anger of parents with disabled children who don't want outsiders to decide life and death issues.
"Do not talk about her quality of life," Rivera wrote of her exchange with the doctor last week. "You have no idea what she is like. We have crossed many, many road blocks with Amelia and this is just one more. So, you don't agree she should have it done? Fine. But tell me who I talk to next."
Mary Beth Happ, a professor at the University of Pittsburgh Medical Center whose research focuses on communication with non-vocal patients, said that the issue of severe mental disability and kidney transplants has been a source of contention for nearly two decades.
"Co-existing health problems such as weakened immune system and/or heart disease, which are prevalent in (Wolf-Hirschhorn syndrome), are an additional risk that transplant centers and parents must consider," Happ wrote in an e-mail.
But Happ and Caplan noted that it's virtually impossible to have a full discussion of Amelia's case because of medical privacy laws.
"We're seeing this more and more where very private, difficult medical decisions are debated in the media without the full facts," Happ said, adding that while the general discussion can be good, the risks of one side or another inflating the situation is "really problematic."
Rivera, 39, and his wife Chrissy plan to meet with hospital officials next week, amid a growing online furor that has experts warning the situation may be much more complex than many realize. The hospital has not commented on the child's case, citing patient confidentiality laws, but acknowledged the online discussion and said on its Facebook page that "we hear your concerns."
Chrissy Rivera posted a blog entry last week that described an encounter she claimed happened at The Children's Hospital. She and her husband were there to discuss treatment for her daughter, Amelia, who was born with Wolf-Hirschhorn syndrome, a rare genetic defect that can cause physical and mental disabilities. Amelia will need a transplant in six months to a year.
The researchers added that previous controversies over mental disabilities and transplants led the Joint Commission on Accreditation of Healthcare Organizations to express concern that many people with disabilities are "denied evaluation and referral for transplantation."
Rivera's blog noted that doctors said Amelia won't need a transplant for six months to a year.
Some experts said that if Rivera's claims are accurate, the hospital's actions are very disturbing.
"Everyone deserves an equal chance to these organs, regardless of your mental capacity," said Charles Camosy, a professor of Christian Ethics at Fordham University.
Camosy said that while it's true that there are shortages of kidneys and other organs, the criteria used to make transplant decisions "should not ever devalue those that are mentally disabled."
"This is a growing movement that transcends liberal or conservative that says this kind of life, because it's so vulnerable, it deserves special protection," he said.
Whatever the medical details of Amelia's situation, her mother's blog captured the anger of parents with disabled children who don't want outsiders to decide life and death issues.
"Do not talk about her quality of life," Rivera wrote of her exchange with the doctor last week. "You have no idea what she is like. We have crossed many, many road blocks with Amelia and this is just one more. So, you don't agree she should have it done? Fine. But tell me who I talk to next."
Mary Beth Happ, a professor at the University of Pittsburgh Medical Center whose research focuses on communication with non-vocal patients, said that the issue of severe mental disability and kidney transplants has been a source of contention for nearly two decades.
"Co-existing health problems such as weakened immune system and/or heart disease, which are prevalent in (Wolf-Hirschhorn syndrome), are an additional risk that transplant centers and parents must consider," Happ wrote in an e-mail.
But Happ and Caplan noted that it's virtually impossible to have a full discussion of Amelia's case because of medical privacy laws.
"We're seeing this more and more where very private, difficult medical decisions are debated in the media without the full facts," Happ said, adding that while the general discussion can be good, the risks of one side or another inflating the situation is "really problematic."
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