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Hospital Sorry For Handling Of Girl With Disability

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A Philadelphia hospital is apologizing for how it handled the case of a 3-year-old who was reportedly denied a transplant because she has an intellectual disability.

The Children’s Hospital of Philadelphia issued a statement Wednesday along with Joe and Chrissy Rivera, a New Jersey couple who went public last month saying they were told that their daughter could not receive a life-saving kidney transplant because of her disability.

“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,” said Michael Apkon, senior vice president and chief medical officer at the hospital. “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.”

The Riveras’ story made national news after Chrissy Rivera wrote in a blog posting that a doctor at the children’s hospital told her that her daughter, Amelia, would not be eligible for a transplant because she’s “mentally retarded.” In response, more than 40,000 people signed an online petition calling for the hospital to reverse course.

Since then, the hospital agreed to evaluate Amelia for a transplant, but no decisions have been made.

“Despite an unfortunate encounter a few weeks ago, we hold The Children’s Hospital of Philadelphia in high regard,” Joe and Chrissy Rivera said in the statement. “Our hope is that this experience will heighten the medical community’s sensitivity to and support for the disabilities community.”

Amelia was born with a rare chromosomal disorder called Wolf-Hirschhorn syndrome that’s marked by the presence of intellectual disability, developmental delay, seizures and distinct facial characteristics.

Hospital officials insisted in the statement that they “do not disqualify transplant patients on the basis of intellectual ability.”

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Comments (5 Responses)

  1. annie says:

    As a parent of a child with an intellectual disability and symptoms very similar to this girl’s… I am horrified by the hospital’s behavior. I cannot believe they still stand behind the disgusting idea that a disability actually reduces a person’s right to live and makes them less of a person. Not to mention at age 3 a child is still full of potential, diagnosis or not, this hospital has no idea what this child is capable of contributing to society in the future. This kind of thing is my worst nightmare for my own child and I hope that the Riveras are able to get their daughter the transplant she needs.

  2. Ivete Hernandez says:

    Es lamentable que se haga esta exclusión a esta niña que tiene las misma necesidades de los otros seres humanos. Simplemente necesita salud, para vivir una vida digna. No importa su capacidad intelectual, lo que importa es la calidad de vida que ella necesita, o es que no se considera un ser humano?

  3. ann masotti says:

    Bravo disability.scoop and change.org for posting the petition for all to sign. As caretakers, parents, guardians, we all have to make our voices heard so that this type of inequality will be addressed. Our loved ones deserve rely on us to advocate, as they often cannot advocate for themselves. I think this mom is wonderful!

  4. Joyce says:

    In your face, Peter Singer!

  5. johnson says:

    to the parents of amelia: I am the parent of two children who are severly developmentally disabled. Children like ours have put us in a position to teach others about a basic human need…LOVE. thank you for letting your love for amelia move you to share your experience. hopefully, it will move the powers that be to “re-evaluate” the way they decide who obtains life-saving organ transplantation and who doesnt. be encouraged for this too shall pass

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