Sunday, 22 January 2012

I had to Pass This On............


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.”
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.”
“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.



Al Penwasser said...

The mindset of who is suitable to live and who is suitable to die didn't end with the mid-1940s.
Or with Germany.
Makes me want to scream.

Janie Junebug said...

Yes, Jo-Anne, this is heartbreaking, and it is wrong, wrong, wrong.

Janie Junebug

Teresa - in the Middle Side of Life said...

i saw this on te news the ther day and it is absolutely heartbreaking. i cannot imagine how these parents feel.

Elisabeth Hirsch said...

So aggravating. This almost happened to my son.

Jo-Anne's Rambling said...

Hi Al......Makes most of us want to scream too

Hi Janie....Yep so very wrong

Hi Teresa......Yes it must be heartbreaking

Hi Elisabeth......We can only hope and pray that they get the transplant

orchid said...

Dearest Jo-Anne,
OMG,this story made me almost angry and sure heartbreaking!!!
Just I'll pray for the child to be able to have the transplant.

Mynx said...

So very very sad and unfair. I wonder if the situation is the same here in Australia

timothy said...

it's heartbreaking but i do understand the hospitals viewpoint. transplant organs are few and far between they have to choose the patient with the best chances of success. being hiv positive and having hep c, plus brain damage make it almost impossible for her to be chosen. it's very very sad and i shall pray for her and her family. miracles do happen!

Burstsof bubbles said...

That is absolutely disgusting, you would head to the media and totally disgrace them in to doing something about it. Only problem is that I wouldn't put it past them to do something on the operating theatre where only they can see whats going on and cover it up.

Anonymous said...

Thank you for sharing this Jo-Anne.
I'm still in shock this kind of thing really happens. Apparently these parents are not the only ones that have gotten this response. It truly sickens me.

Bea Beautiful said...

This is appalling, awful, terrible, angering, upsetting, so many words that still do not express how very wrong it is. I cannot believe a doctor could sit across from parents and say such things.

I'd take my child somewhere else. I would keep taking my child somewhere else until I found someone who will do the procedure. If they could get on television about this, a doctor would step forward and I'm sure donors would as well.

CWMartin said...

I too can see the hospital's point. It was presented horribly wrong though. And in the end, shouldn't it be the parent's choice? Only they can be the judge of what the child's quality of life HAS been and what it could be. For that doctor to say, "I've been warned about you" makes it sound like "the team" sent him to be the "hatchet man." On the other side, though, who dies because they didn't get that kidney? How stretched are the resources? A different decision might be made if the facts are presented in a human way instead of a confrontational one.

Jo-Anne's Rambling said...

Hi Orchid......I would never had thought this would happen in the 21st century

Hi Mynx.....Yes I also wonder if it the same here

Hi Tim.....Yes we may understand the hospitials viewpoint but it was handled very badly.....

Hi Bubbles.....Yes if the media got involved would it make a difference maybe.........

Hi Craziness....I read it and I had to share it......

Hi Bea......This really sounds like it was handled very badly the doctor should have thought how would he feel if it was his child and he may have spoken to the parents with more comapssion.....

Hi CW......Yes it was handled very badly and we need to remember the family doesn't want to be added to the transplant list they are prepared to try and find a doner from inside the family.........

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