The Children’s Hospital of Philadelphia has issued a formal apology to the family of Amelia Rivera, a three-year-old girl with Wolf-Hirschhorn Syndrome, who was denied a kidney transplant earlier this year.
Chrissy Rivera, the girl’s mother, garnered huge amounts of support from the special needs community after writing that in a meeting, a CHOP doctor said that Amelia had been denied because, in his words, Amelia has brain damage and is mentally retarded.
Amelia’s case was also supported by a wide range of high-profile people, ranging from Philadelphia’s Archbishop Charles Chaput to New Jersey Senate President Steve Sweeney. The Riveras’ cause was also supported by Tim Shriver, CEO of the Special Olympics. Mr. Shriver reported on his blog this morning his happiness that “together, we helped turn the tide toward justice and fairness.”
CHOP and the Rivera family released a joint statement yesterday on CHOP’s Facebook page, in which CHOP emphasized the need for better communication with families.
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.
The Rivera family added to the statement,
“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. 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.”
Amelia’s transplant request is currently being re-evaluated by the hospital. Although both CHOP and the family are careful to emphasize that a decision has not yet been made regarding the transplant, the family has written in a separate blog post that it remains optimistic for Amelia’s chances. The family also wrote of its immense gratitude toward the many thousands of people who voiced their opinions that cognitive impairment is not, in itself, a reason to deny a kidney transplant.
(Photo Credit: Chrissy Rivera)