Hospital: Sorry for handling of Amelia’s transplant quest

Amelia Rivera, 3, with her mother, Chrissy, and brother Nathan. There is more than one way to decide how to make transplant eligibility decisions. (Michael Bryant / Staff photographer)
Amelia Rivera, 3, with her mother, Chrissy, and brother Nathan. There is more than one way to decide how to make transplant eligibility decisions. (Michael Bryant / Staff photographer)
Posted: February 15, 2012

Children's Hospital of Philadelphia apologized Wednesday for the way it had communicated with the parents of Amelia Rivera, the 3-year-old disabled girl whose parents want her to have a kidney transplant.

In a statement released with the approval of the Riveras, the hospital expressed regret for how it had handled the situation.

Joe and Chrissy Rivera gained national attention in January when they said a hospital physician had recommended against such a transplant because of her mental disability.

Amelia suffers from a condition called Wolf-Hirschhorn syndrome, which causes a variety of developmental delays.

Hospital officials initially declined to comment on the case, citing confidentiality rules, but said that in general, they do not take intellectual ability into account when determining transplant eligibility.

But in the statement issued Wednesday, the hospital said: "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."

The statement was issued by Michael Apkon, the hospital's senior vice president and chief medical officer.

The hospital said that no decision had been made on whether the surgery would be performed.

"We are completely committed to the careful review of our processes and written material to ensure that we are sensitive to the needs of all families," Apkon continued, "including the specific needs of families of children with disabilities."

The Riveras, of Stratford, Camden County, also contributed to the statement.

"Despite an unfortunate encounter a few weeks ago, we hold the Children's Hospital of Philadelphia in high regard," Joe and Chrissy Rivera said. "We've had a three-year relationship with the hospital and are pleased with the care that Amelia has received. Our hope is that this experience will heighten the medical community's sensitivity to and support for the disabilities community."

Joint Statement of the Rivera Family and The Children’s Hospital of Philadelphia

In response to significant public interest surrounding the Amelia Rivera story, the Rivera Family and The Children’s Hospital of Philadelphia have issued the following joint statement.

Philadelphia, PA – February 15, 2012 – Over the course of the last month we have been both touched and overwhelmed by the outpouring of public support for Amelia Rivera, her health and well-being, and her eligibility for a kidney transplant.

As a family and as health care providers committed to Amelia, we have come to realize that despite a difficult and emotional journey, we share two very important things: first, an unwavering commitment to the health and future of Amelia and second, a strong desire to learn from this experience and remain focused on making the necessary and proper medical decisions for Amelia.

“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. We are completely committed to the careful review of our processes and written material to ensure that we are sensitive to the needs of all families, including the specific needs of families of children with disabilities. While we can unequivocally state that we do not disqualify transplant patients on the basis of intellectual ability, and have a history of transplanting children that have a wide range of disabilities, this event underscores the importance of our responsibility to effectively communicate with families. We appreciate the role the Riveras have played in helping us recognize opportunities to improve our communication,” said Michael Apkon, MD, senior vice president and chief medical officer at The Children’s Hospital of Philadelphia.

“Despite an unfortunate encounter a few weeks ago, we hold The Children’s Hospital of Philadelphia in high regard,” said Joe and Chrissy Rivera. “We’ve had a three year relationship with the hospital and are pleased with the care that Amelia has received. Our hope is that this experience will heighten the medical community’s sensitivity to and support for the disabilities community. By agreeing to update their process and materials to put people first, above their diagnoses, a respect for people’s humanity is communicated above all else. If our experience can ensure that our daughter is seen as Amelia, and not as a diagnosis of her mental abilities, we feel it will go a long way in making sure no parent has to endure the emotional distress that we faced during this difficult time.”

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 at CHOP as at other transplant centers. Decisions are never made in a single visit, but rather as part of a process that includes a comprehensive multi-disciplinary evaluation in collaboration with the family.


Contact staff writer Tom Avril at 215-854-2430 or tavril@phillynews.com

comments powered by Disqus
|
|
|
|
|