wolfhirschhorn
What I am about to share with you I got from Craziness Abounds over at Crazy World. I read
this and my heart broke. I couldn't believe that in a country that
claims so many freedoms, our system would deny a child a better way of
life. I can't comprehend in a such a politically correct society that we
would treat any individual, especially a child to this kind of
behavior. I am horrified. I hope you will be too and will help me spread
this around. I don't care how many of your blogs I go to and see this.
The more the merrier. This is on a blog called
The post is entitled Brick Walls
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.
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.”
“Yes.”
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?”
In a voice that mimics hers, I snort, “Well, what happens if you die
tomorrow? Who will take care of your children? Your responsibilities at
work?” She breathes in and her eyes widens. “Right!” I throw at her.
“Neither of us can predict the future and we shouldn’t try. But if
Amelia does not have this transplant she has no future!”
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…”
I am beginning to realize I want this over with so I can move onto the
next person who will help me with the transplant. So I say the words
and ask the questions I have been avoiding.
“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.”
“And then who do I see?”
“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.
I hope you are disturbed, troubled, distressed, and pissed off when you
read this. I hope you share it with many, many people. Although I did
not know this yesterday, this is very common and happens across the
map. I have researched and researched and researched transplants and the
MR, as they are called in the medical journals, and it is appalling.
We are in the year 2012 and my child still does not have the right to
live, the right to a transplant, because she is developmentally delayed.
If this bothered you as much as it bothered me, if you can imagine the
pain this family is going through, help me spread this around.
After having almost lost my daughter last weekend this breaks my heart. I
can't imagine someone looking you in the face and saying Let your child
die, because she is not like others! which is exactly what this putz
just told this family to do. God help us.
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