Tuesday, 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.

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.



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

  1. Jo says:

    I thought the information that was provided said that little Amelia needed a transplant within 6 months. How could a decision not have been made yet? I thought the meeting with the doctor that made the awful comments was a meeting to make the decision. Was everyone misled here?

  2. Laurie says:

    No, the meeting was with CHOP to discuss the process by which they would be able to determine whether or not the transplant was a viable option for Amelia– just like any other parent would be granted if her child was in the same situation. The problem presented was that Amelia’s parents were not given the opportunity to go through that process; the transplant doctor said that based on her “Mental Retardation,” she was not a candidate for a transplant– regardless of where the kidney came from. Whether Amelia has the transplant is now going to be based on the series of tests and evaluations that all transplant recipients are offered– not a death sentence handed down by one doctor. However, she has not yet finished going through that process, so it is yet to be determined what the next step will be. Does that make sense?

  3. I’m so glad the hospital has reconsidered and is willing to evaluate your little girl for candidacy. I hope they find her eligible. I’m so glad wiser minds prevailed than that of the idiot who tried to halt the entire process by rejecting her at a key meeting.

  4. shirley bidnick says:

    This sounds like a step in the right direction. Amelia’s situation initiated an important public discussion. I am sorry that you had to endure the emotional turmoil it involved. You did it for all of us. Thank you. There still many step to take before we create a society where individuals with severe developmental disabilities are valued for the contibution they make and are protected.

  5. thinking of you says:

    Has anyone heard anything further on Amelia’s status? Any updates or know if she was finally approved for the transplant? I find it sad that after the media explosion a few months ago suddenly there is nothing about this little girl, not even here in the community where she found so much support. It’s like she just disappeared.

    I hope everything is well for the family. People haven’t forgotten about you.

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