From a blog about Wolf-Hirschhorn Syndrome, a story of a doctor's refusal to let parents help their daughter because she is mentally retarded. The post is worth a read as it brings up an important discussion on the difference between "quality of life" and the "sanctity of life." Discuss.
I am going to try and tell you what happened to us on January 10, 2012, in the conference room in the Nephrology department at Children’s Hospital of Philadelphia.
We arrived for our regular Nephrology visit with Amelia’s doctor who has seen her for the last three years. She examines Amelia and sends us for labs. I ask about the transplant and she says we have about six months to a year until she needs one. She tells us she reserved the conference room and when we get back from labs, we can meet with the transplant team and he can tell us about the transplant process.
After the labs, Amelia falls asleep in her stroller and we are called back to a large room with a screen and about sixteen chairs. Joe and I get comfortable and leave a space between us to fit the stroller. After about five minutes, a doctor and a social worker enter the room. They sit across from us but also leave a space between the two of them.
The doctor begins to talk and I listen intently on what he is saying. He has a Peruvian accent and is small, with brown hair, a mustache and is about sixty five years old. He gets about four sentences out ( I think it is an introduction) and places two sheets of paper on the table. I can’t take my eyes off the paper. I am afraid to look over at Joe because I suddenly know where the conversation is headed. In the middle of both papers, he highlighted in pink two phrases. Paper number one has the words, “Mentally Retarded” in cotton candy pink right under Hepatitis C. Paper number two has the phrase, “Brain Damage” in the same pink right under HIV. I remind myself to focus and look back at the doctor. I am still smiling.
He says about three more sentences when something sparks in my brain. First it is hazy, foggy, like I am swimming under water. I actually shake my head a little to clear it. And then my brain focuses on what he just said.
I put my hand up. “Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?”
The tears. Oh, the damn tears. Where did they come from? Niagara Falls. All at once. There was no warning. I couldn’t stop them. There were no tissues in conference room so I use my sleeve and my hands and I keep wiping telling myself to stop it...
We arrived for our regular Nephrology visit with Amelia’s doctor who has seen her for the last three years. She examines Amelia and sends us for labs. I ask about the transplant and she says we have about six months to a year until she needs one. She tells us she reserved the conference room and when we get back from labs, we can meet with the transplant team and he can tell us about the transplant process.
After the labs, Amelia falls asleep in her stroller and we are called back to a large room with a screen and about sixteen chairs. Joe and I get comfortable and leave a space between us to fit the stroller. After about five minutes, a doctor and a social worker enter the room. They sit across from us but also leave a space between the two of them.
The doctor begins to talk and I listen intently on what he is saying. He has a Peruvian accent and is small, with brown hair, a mustache and is about sixty five years old. He gets about four sentences out ( I think it is an introduction) and places two sheets of paper on the table. I can’t take my eyes off the paper. I am afraid to look over at Joe because I suddenly know where the conversation is headed. In the middle of both papers, he highlighted in pink two phrases. Paper number one has the words, “Mentally Retarded” in cotton candy pink right under Hepatitis C. Paper number two has the phrase, “Brain Damage” in the same pink right under HIV. I remind myself to focus and look back at the doctor. I am still smiling.
He says about three more sentences when something sparks in my brain. First it is hazy, foggy, like I am swimming under water. I actually shake my head a little to clear it. And then my brain focuses on what he just said.
I put my hand up. “Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?”
The tears. Oh, the damn tears. Where did they come from? Niagara Falls. All at once. There was no warning. I couldn’t stop them. There were no tissues in conference room so I use my sleeve and my hands and I keep wiping telling myself to stop it...
Complete post here.
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In discussing this with my husband, my sense of this is that on one hand we respect "conscience clauses" for doctors. This doesn't really fall into that category. But if I am wrong then CHOP should acknowledge that as a matter of conscience they will not perform elective life extending procedures on the mentally handicap and the let the ADA have it's way with them. Letting them dodge and dither under the guise of the doctor/patient relationship would be an injustice on both sides. If you are "brave" enough to crush the hope of a mother and father of a mentally disabled child and even remind those parents of your emotional pain, then be brave and tell the whole world: The Pediatric Transplant Team of Children's Hospital of Philadelphia does not recognize the equal rights of the disabled, as they are sub-human. Or maybe they could just state that for the record that the Transplant Team unanimously embraces eugenics, lower life forms need not apply.
ReplyDeleteI cry, BS, on all of this given the fact that we cannot predict the future, we cannot know whether this person or that person will get the most out of life, whose life will 'count" the most. Would they for instance feel responsible if one of the special chosen transplant patients turned out to be a serial killer in the future? Saving the life of a future serial killer is way worse than saving the life of a little handicapped girl who showers her family with joy. What do you think? Wait, you mean, no one can predict the future and even if one of their patients did turn out terribly they would in no way be responsible for the catastrophically and philosophically preventable loss of life? Of course, that is correct, but then they could be responsible for saving the light of this family's life.
Ultimately, this story is heartbreaking personally and generally. This child really does not deserve this. Generally speaking, it shows how flagrant the assault on human dignity has become. Made in God's image used to mean something.