There is a little girl in desperate need of a new kidney. Her parents have already been in front of the Transplant Team's Board, only to be denied of her lifesaving surgery through Children's Hospital of Philadelphia.
The little girl is still in a stroller. She is only three years old. And severely mentally handicapped.
And that is what the Nephrology Department specialists and the Transplant Team are basing her denial of services on. Not on the fact that she has a severe case kidney failure or that the family is ready to be tested as viable matches.
Plus, the doctors had stated apparently, that they fear for the little child where anti-rejection medications are concerned. Mainly due to the fact that they COULD cause mental disability. Um... How much worse can this poor child get with already being as mentally handicapped as she is?!
To read the full story, from the parent's own words of what had happened, CLICK HERE.
I can (sadly) see BOTH sides of that proverbial fence. But on the flip side, to ONLY base the "need" on one specific area, primarily intellectual function is NOT something that I agree with.
As a Transplant Team, they MUST base it on a number of factors. Including not only viability and psychological areas, but on SO many other levels, including the severity of the problem with the kidneys its self.
They did make at least ONE valid point, regarding her age, as well as her need. At her age, and the rate of stability with the new kidney, she is going to need AT LEAST one more, if not two or more kidneys throughout her lifetime. And they will not always be available from family.
And without testing the family NOW, there is NO way of even knowing if ANYONE, including the parents are a match.
But to deny ANYONE, let alone a child of a lifesaving surgery, including a transplant based solely upon a person's mental disability is just complete and utter bullshit.
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You said it --- sad that our world has come to the place where current people decide what is a life worth living.
ReplyDeleteFrom Amber Didreckson Tanner (via CHOP's Like Page on FB)
ReplyDeleteIt is very far down but this is what they have posted on this matter:
Children's Hospital of Philadelphia
We have watched with great concern the comments regarding criteria used in making transplant eligibility decisions. We understand your concerns and reactions to the Facebook postings.
We strive to provide the safest possible care for our patients and we make transplant eligibility decisions based on widely-accepted, medically valid methods, with many factors considered. We want you to know that CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status. Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities and impairments.
CHOP’s transplant programs continue to evaluate and perform transplants on some of the most complex cases in the country. We use an established framework for consistent evaluation and transplantation. Each child is evaluated on an individual basis, taking multiple medical, surgical, and psychosocial aspects into consideration. In each evaluation, we consider the possible risk and outcome of the recipient, potential donor options, as well as alternative therapies.
In order to determine eligibility for transplantation, a multidisciplinary evaluation is completed by several members of the transplant team, which would include careful assessment of a patient by surgical and transplant specialists, as well as, psychosocial, and neurologic specialists. Parents and family members are very much a part of the discussion.
We wish to emphasize that all determinations of eligibility for transplantation are treated on an individual basis. We make all decisions regarding eligibility using a non-discriminatory approach, after a multidisciplinary assessment and discussion, which is the standard of practice throughout the country.
These communications are very important to us and provide us with an opportunity to always re-examine and reassess our approach and process. We hope that we can continue to improve and continue to provide exceptional care for children with organ failure.
http://www.facebook.com/miastransplant Is a support/like page on Facebook for the little girl and her family.
ReplyDeletehttp://www.facebook.com/ChildrensHospitalofPhiladelphia is the hospital's like page. The doctor is employed by CHoP and is the establishment (along with their Social Worker as well!) who denied the transplant to Amelia due to her cognitive disabilities.