Transplant Family and CHOP Release a Joint Statement

ameila w family
Chrissy and Joe Rivera with daughter Mia.

Just got this press release, released jointly by Children's Hopsital of Philadelphia and the family of Mia Rivera. She's the three-year-old whose need for a kidney transplant was denied, her family alleged in my column last month, because of her severe mental disability. No reason was given for the release of the statement, but it's good to know that CHOP plans to take a good luck at its organ-transplant policies and how they're communicated to patients' families. Stay tuned.

FOR IMMEDIATE RELEASE                             

Wednesday, February 15, 2012                         

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.

 "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.