I get a lot of emails, none nicer or more appreciated than the one below...
Hi Gil -
I just wanted to thank you for your attempt to cool the fires blazing over CHOP's alleged denial of a kidney transplant for Amelia Rivera due to her "mental retardation". I'm a nurse who has worked at CADES (Children and Adult Disability and Educational Services) for the last 8 years in their Adult Day Program. I've become intimately connected with consumers with varying degrees of disabilities, including mental retardation. as well as their families. I can't think of a more devastating circumstance than to have a child with profound physical and intellectual disabilities, and I also know that parents of these children often have to fight for every single benefit and special services for their children. ADA aside - money is a key factor in securing the optimal services for these children, and funding sources continue to diminish.
You are right - CHOP is a world class, honorable and amazing institution that we are fortunate to have so close by. There is no way that this transplant team simply refused treatment "because your daughter has mental disabilities". Period. But
I have no doubt that in the parents' minds, that was the essence of the decision from the transplant team.
Over my brief 8 years in this field, I've seen children and adults with profound intellectual and physical disabilites have all kinds of required surgeries. If CHOP's team carefully evaluated the big picture of Amelia's health issues and determined that a huge procedure like a transplant is unadvisable, as horrific as it is for the parents who love Amelia dearly, surely there are many other factors contributing to CHOP's denial than just her mental retardation.
Her family, in these 3 short years, has surely been traumatized time and again, first by the disappointment and shock of having a profoundly ill child, and subsequently as new problems are discovered and more devastating diagnoses revealed. They love her fully and deeply and the medical profession has given them bad news before this transplant denial. The is the most serious in terms of Amelia's life expectancy, and therefore the most unbearable for them.
Didn't mean to go on and on, but as a medical professional and a realist (as nurses tend to be), I knew when I first heard this story that there was much more to it than the public can know. I just really appreciate you bravely coming to CHOP's defense and wanted to tell you so, because all your emails today surely won't be as affirming as this one!
I almost always appreciate your column!! As an editorialist, I know that's okay with you.
Leslie Erickson BSN, RN