There is a little girl named Amelia (Mia for short). She is almost three years old and suffers from a rare genetic disorder called Wolf-Hirschhorn Syndrome. Part of the disability is severe cognitive delays and disabilities. But apparently, they don’t slow her down.
Amelia can laugh, smile, plays with her family pet and is apparently a little girl that loves to have her picture taken. In most ways, she is a “normal” little girl. With some pretty big odds stacked against her.
She also is going to need a kidney transplant in the next six moths to a year. Or else, she will surely die.
But one doctor, from Nephrology, has flat out refused to help her. Even though the parents do NOT wish to have her on the transplant National Registry. They wish to donate via family members and themselves. Still, the doctor at Children’s Hospital of Philadelphia has refused.
What in fact was the basis of refusal to operate and give Mia a second chance at a BETTER and a HEALTHIER life?
“Mentally retarded”, and “fear” of the drugs she will need post-transplant to let her kidney survive giving her seizures (she ALREADY has them!) or make her mentally “retarded” (she already IS!). So, how much worse can this honestly get for her, other than a CERTAIN death sentence??
The following is excerpts taken from Mia’s mother’s blog entry on wolfhirschhorn.org.
“The doctor interrupts. He puts his hands up and tries to take a stern voice with me. “These medications she has to take after the transplant, they are very dangerous. They can cause seizures. We have to get the dose exact. They may cause brain damage.”
“DO OTHER CHIILDREN WHO HAVE A TRANSPLANT TAKE THIS MEDICATION?”
“Yes, but it is different for her. She is already brain damaged and mentally retarded.”
He pauses as if he is choosing his words carefully. “I have been warned about you. About how involved you and your famliy are with Amelia.”
The devil himself could not have produced a more evil laugh. “Ha! Warned! That is funny! You have no idea…””
““So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”
“Yes. This is hard for me, you know.”
My eyes burn through his soul as if I could set him on fire right there. “Ok, so now what? This is not acceptable to me. Who do I talk to next?”
“I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and we will vote.””
““Well, you can then take it the ethics committee but as a team we have the final say. Feel free to go somewhere else. But it won’t be done here.”
They both get up and leave the room.
I look at Joe who is sobbing trying to get the stroller and Amelia’s backpack. I break down with him before we head to the parking garage.”
Some people are calling Amelia’s parents “liars”. Some are saying she is embellishing the story. Some are hitting her for invoking emotional responses from the reader. As a mother, as a mother to a disabled child, and as a TRANSPLANT RECIPIENT *myself*, of course I have an EMOTIONAL response to this outrage!… And my parents had faced a VERY similar situation with me.
What also makes this sad and angering for me is that the Social Worker that met with Mia’s parents, along side of the doctor, was rude, insensitive, unprofessional and it sounds like she almost ENJOYED going toe-to-toe with the mother, when Mom became “defensive” in the fight for her child’s life.
Here is the statement that CHoP made on their “Like” page last night in regards to the entire situation…
“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.”
Yes, be ANGRY at the Social Worker in question. Yes, be ANGRY with the “Specialist” doctor in question. And I say YES, to be angry with Children’s Hospital of Philadelphia for obviously trying to “shut up” those of us in the Disability Community by deleting our posts of concern and shock at the outrage that lays before us. After all, the doctor and their Social Worker are REPRESENTIVES, faces if you will of CHoP.
And here is the face of those with Mental Disabilities who is in her own way, defacing the stigma and dogma of a society against her in the fight for the RIGHT to live as full and as long a life as she can have…
How can we in the 21st Century, in 2012 think of ANY person, child or adult, that is mentally handicapped (in any severity of the term) as just a piece of meat that is more fit for the trash can, than as a HUMAN BEING that have EVERY right as a “normal” person to live their life to the fullest measure and length as possible?
What is happening to this little innocent BABY and her parents is beyond deplorable and reprehensible.
How does a prisoner’s “rights” outrank a (disabled) child’s “rights” when it comes to LIFE-SAVING surgery? It’s beyond my comprehension. To have this type of “backwards” thinking is an atrocity to mankind.