Hospital: Sorry for handling of Amelia’s transplant quest

February 15, 2012|By Tom Avril, INQUIRER STAFF WRITER
  • 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)

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.

Story continues below.

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.

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