Remember Amelia Rivera, the little girl with Wolf-Hirschhorn syndrome who, according to her mother's account on the blog wolfhirschhorn.org, was denied a kidney transplant by Children's Hospital of Philadelphia because of her intellectual disabilities? Chrissy Rivera's blog post ignited a firestorm of protest on blogs, a Facebook group, newspaper articles, a Change.org petition, and most especially CHOP's Facebook page, which quickly filled with angry messages.
There's been conversation since between the Riveras and the hospital, about Amelia's case in particular and the hospital's policy on patients with intellectual disabilities in general, and on Tuesday a joint statement was released by CHOP and the Riveras, in which the hospital acknowledges the terribleness of that first transplant meeting and the "importance of our responsibility to effectively communicate with families" (while reasserting that discrimination is not its policy); the Riveras confirm their previous satisfaction with the hospital and desire to continue Amelia's treatment there; and they all look forward to continuing to examine the medical feasibility of a transplant for Amelia.
When I first wrote about Amelia in a January 13 blog post, I started a running list of links on the story, adding updates to that original post as they came along. That post is now about 1,700 words long, and long gone from the front blog pages here. So I thought, for this happy ending of the story -- happy as it could be without an announcement that Amelia is getting a transplant (or maybe a public denunciation of the doctor and social worker who showed such insensitivity in the first place) -- I'd start a new post and link list. I'll add reactions to the official statement to this list as I see them around the Web:
- Hospital: Sorry for handling of Amelia's transplant quest from Philly.com
- Philadelphia hospital apologizes to family of Amelia Rivera from USA Today
- Amelia Rivera and the issue almost everyone is overlooking from Unhandicapping the Disabled Life
- Hospital admits mishandling communication over transplant from CourierPostOnline.com
- CHOP Apologizes to Amelia Rivera from The World of Special Olympics
- Hospital Sorry for Handling of Girl With Disability from Disability Scoop
- Children's Hospital of Philadelphia apologizes to Rivera family over kidney transplant flap from CBS News
- Hospital Apologizes to Family of Girl Denied Kidney Due to "Mental Retardation" from Strollerderby
- Update on the Kidney Transplant Dispute at CHOP from About.com Pediatrics
If you've written or read something that belongs here, leave a link in the comments. Your own reaction can go there, too. Or use this as an opportunity to add your message to the We Expect Respect manifesto.
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