Hospital apologizes to Amelia Rivera who was denied kidney transplant

Children's Hospital of Philadelphia has issued an apology to the parents of Amelia Rivera, a disabled three-year-old girl who, according to her parents, was initially denied a chance at a kidney transplant because she is “mentally retarded.”

In a statement released jointly with Joe and Chrissy Rivera today, a hospital official also promised to review the way the hospital handles such cases. And Amelia's possible transplant is now under consideration, as her parents have previously reported.

Amelia has a genetic disorder called Wolf-Hirschhorn syndrome. It causes intellectual delays, seizures and other health problems - and in her case has led to a kidney condition that could kill her in six months to a year, her parents say. They say they hope to find a family member or other living volunteer to donate the organ.

Michael Apkon, senior vice president and chief medical officer 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.” He added, “While we can unequivocally state that we do not disqualify transplant patients on the basis of intellectual ability... this event underscores the importance of our responsibility to effectively communicate with families.”

This is the first direct statement the hospital has made about the case, which became an online cause for tens of thousands of people after Chrissy Rivera blogged about a meeting with a doctor and social worker there. She wrote that the doctor came to the meeting with the words “mentally retarded” and “brain damage” highlighted on two pieces of paper and insisted that Amelia's mental delays made her ineligible for a transplant.

In today's statement, the Riveras say, “Despite an unfortunate encounter a few weeks ago, we hold The Children's Hospital of Philadelphia in high regard. We've had a three year relationship with the hospital and are pleased with the care that Amelia has received.” If their daughter can be “seen as Amelia, and not as a diagnosis of her mental abilities” it may help other families, they say.

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.”

Comments

  1. Sara Mohamed Sara Mohamed Trinidad and Tobago says:

    Thank you for your bravery and maturity in issuing an apology to the Riveras. This child deserves all the same entitlements for a chance to live as anyone else as she may very well outlive and shine more than you or me.  I see their talents every day and I hope that GOD finds a suitable donor for her, if it is his will.  

    I hope that this Hospital continues to provide the loving care to all it's patients and become more aware that we are ALL differently abled, but ALL God's Children!

  2. ELLEN L. KLEINERT ELLEN L. KLEINERT United States says:

    Totally pathetic. I am sure they have had good care there in the past & the family is guarded about saying what they really feel. I would never permit my child to be a patient at that hospital if I was in that situation. As a parent of a child who has special needs, as well (we do not use the "R" word...rather a young adult with developmental disabilities)....the hospital ought to be ashamed of themselves. They just figured that since the child is disabled why bother giving her the opportunity of continuing her life...as though her life is worth less than any one else's that does not have special needs! They are disgusting & I would no longer trust my child to their care. The only reason they issued a public apology was because their legal department got on them after thousands of people cried out for justice on a blog!!! That is total discrimination against the disabled so they had no choice but to issue a public apology. Shame on Children's Hospital of Philadelphia! Should they change their name to, "Children's Hospital of Philadelphia for non-disabled children only?"  HUMMMMM SHAME SHAME SHAME!!! WE ARE ALL
    G-D'S CHILDREN NO MATTER WHAT!!!

  3. James James United States says:

    Praise God! Hopefully, she could have transplant soon. No one has the right to judge if she would have deserve life or not, except God.

The opinions expressed here are the views of the writer and do not necessarily reflect the views and opinions of News-Medical.Net.
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