Wednesday 18 January 2012

A Final Few Thoughts on the Story About Amelia

The ethics committee of the Children's Hospital of Philadelphia must be feeling the heat. Their decision to refuse three year old Amelia Rivera a kidney transplant because of her 'mental retardation' has kickstarted a vigorous and coordinated response in the worldwide community of parents of children with disabilities. So far, a petition to the hospital has collected 27,811 signatures of those who would implore the Philadelphia paediatricians to reverse their decision on Amelia's transplant surgery.

I have been a member of online parenting support groups for many years. I have made good friends of mothers and fathers of children similar to Nicholas. I have never met these internet friends personally, but that doesn't change the fact that I pray for their children when they are ill and I look to my friends in this community for encouragement and strategic advice when I need it. One of the most devoted and wisest mothers I have met online is a woman called Rose. This is what she wrote on one forum about the Amelia case:

Amelia has an identified condition, which likely has a life span attached to it. My sons are undiagnosed, but that didn't stop medical and social services professionals from telling me not to expect my boys to live beyond the age of: 2, 5, 10, 13, 18, 21, etc. up to the present day. People defy the odds against them every day. But they have to be given a chance to defy those odds in the first place.

To the social worker's query about who will administer Amelia's meds when she's in her 30's, my response would be, "Wouldn't it be glorious if Amelia's kidney allowed her to live to be in her 30's? Or what if she lived to be 20? Or even 10? Isn't Amelia entitled to that opportunity?"

Who will take care of Amelia when she's in her 30's is a general question, isn't it? Her parents will have to plan for her future care, and whoever those persons are taking care of her will be responsible for her medication administration. Just as you have done for Nicholas, and every parent of a child with special needs must do. This social worker's concern is disingenuous.

If Amelia's medical team presented solid reasons why medically Amelia isn't a good candidate for a transplant, then that would be worthy of consideration, of course. For example, if she is too fragile to survive the surgery, or if her condition would affect her body's acceptance of the kidney, or if she has a bleeding disorder, etc. Amelia's parents must be apprised of all medical obstacles to the transplantation, not left feeling that their daughter has no value, because of her condition.

Rose is the parent of two adult men, both with an undiagnosed, progressive neuromuscular disease. One of her beloved sons passed away a few years ago; her other son is entirely dependent and lives at home with complex twenty-four nursing care provided by the family. Rose speaks from the battleground of love and dependency.

All physicians treating people with disabilities, especially cognitive disabilities, should listen to parents like Rose. Otherwise, they risk forgetting that providing loving care for someone very dependent over time makes family members wiser and better equipped to make difficult treatment decisions. Now, I'll sign that petition. Tomorrow, I will blog about friendship amongst mothers.

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