How’s that for an answer to “Why I Am Catholic,” dear reader? Here, I’ll say it again: because of the Twilight Zone episode my country has become. Because when lifesaving care can be denied to your child because of mental handicaps, or physical disabilities, you know, for the good of the herd (or is it for the good of Mammon?), that’s when you realize how our disrespect for human dignity has turned our world over to monsters.
Maybe it’s only me hearing the theme to Rod Serling’s series of scary teleplays in my head when I read something like this heartrending, and nonfictional, scenario that unfolded a few days ago in a hospital in Philadelphia.
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.
I point to the paper and he lets me rant a minute. I can’t stop pointing to the paper. “This phrase. This word. This is why she can’t have the transplant done.”
I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.
A bit of hope. I sit up and get excited.
“Oh, that’s ok! We plan on donating. If we aren’t a match, we come from a large family and someone will donate. We don’t want to be on the list. We will find our own donor.”
“Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays” He says each word very slowly as if I am hard of hearing.
“STOP IT NOW!” The anger is taking over. Thank God. Why did it take so long to get here?
The social worker is writing some things down. Not sure what. She casually gets up to take a call. My eyes follow her to the phone and I see Joe’s face. His mouth is open, his face is pale and he is staring straight ahead of him at the white board.
Rage fills the room. I point in his little, brown pudgy face. “Do not talk about her quality of life. You have no idea what she is like. We have crossed many, many road blocks with Amelia and this is just one more. So, you don’t agree she should have it done? Fine. But tell me who I talk to next because SHE WILL HAVE IT DONE AND IT WILL BE AT CHOP.”
I see the social worker quickly writing down what I just said. Joe hasn’t moved. Amelia is still asleep.The social worker decides to join the conversation. “Well, you know a transplant is not forever. She will need another one in twelve years. And then what? And do you have any idea of the medications she will need to take to keep her healthy?”
I speak through gritted together. “YES, I HAVE DONE ALL MY RESEARCH.”
She smirks a little. “Well, what happens when she is thirty and neither of you are around to take care of her. What happens to her then? Who will make sure she takes her medications then?”
Go read the rest. The Anchoress is also writing on this travesty and you would do well to check out her thoughts too. Please say a prayer for Amelia and her family, and for the rest of us as well. Then, if you know anyone who can help this family, via the news media, elected representatives, or by any means necessary, please contact them at once, and get this story into their hands.
Surely, as a nation, we are better than this! Because stories like this one make me feel a lot like a certain astronaut named Taylor, when he was marooned on a certain planet that wasn’t quite right. Remember the one?
Spoiler Alert! It turned out to be…Earth! What will the King say?
And the king will say to them in reply, ‘Amen, I say to you, whatever you did for one of these least brothers of mine, you did for me.’
Then he will say to those on his left, ‘Depart from me, you accursed, into the eternal fire prepared for the devil and his angels.
For I was hungry and you gave me no food, I was thirsty and you gave me no drink, a stranger and you gave me no welcome, naked and you gave me no clothing, ill and in prison, and you did not care for me.’
God forgive us, for we know not what we do.
UPDATE: We are a better people than that! Join “Team Amelia” today!
The conference-room story Rivera shared is “potentially very disturbing,” but probably not uncommon, says David Magnus, director of the Stanford Center for Biomedical Ethics. Without knowing the child’s full medical history, it is impossible to know if she’s an appropriate transplant candidate, he says.
But “it would be wrong for developmental delay to be the sole basis, morally wrong,” and also illegal under the Americans With Disabilities Act, Magnus says. Magnus says he knows of at least one child with Amelia’s disorder who had a kidney transplant at Stanford’s Packard’s Children’s Hospital. He does not know how she fared. He points out that kidneys do not last forever in any recipient.
My bold there, folks. Sign the petition, drop a line to the hospital, share the story, etc.Support #teamamelia on Twitter too.