[blparent] More about Amelia Rivera's Need for a KidneyTransplant

Sat Jan 21 20:20:42 UTC 2012

Kate I had the same reaction.  I pasted the link but didn't share it from 
the website.

-----Original Message----- 
From: Kate McEachern
Sent: Saturday, January 21, 2012 3:00 PM
To: NFBnet Blind Parents Mailing List
Subject: Re: [blparent] More about Amelia Rivera's Need for a 
KidneyTransplant

OK I signed it and was about to put it on facebook but I didn't because they
want to poest things on my page on my behalf.  I just don't do that.
Kate
----- Original Message ----- 
From: "Jo Elizabeth Pinto" <jopinto at msn.com>
To: "NFBnet Blind Parents Mailing List" <blparent at nfbnet.org>
Sent: Saturday, January 21, 2012 12:30 AM
Subject: [blparent] More about Amelia Rivera's Need for a Kidney Transplant

> Hi.  Pipi posted a URL to a petition the other day, and I followed up on 
> it and signed, but I wanted to make sure that none of you missed its 
> significance.  Three-year-old Amelia Rivera is in need of a life-saving 
> kidney transplant, but the Children's Hospital of Philadelphia doesn't 
> want to give it to her because she's mentally handicapped.  The doctors 
> don't believe she has quality of life because she's disabled.  This is not 
> only tragic for Amelia and her family, it's scary for us all.  Who will be 
> next when doctors get to start making decisions about who lives and who 
> dies, who has a quality life and who doesn't?  Will the blind be barred 
> from getting transplants?  The deaf?  The poor?  The brunette?  Okay, I 
> may be stretching things, but I urge all of you to read the below text 
> that I found from Amelia's mother, and then go to the following URL and 
> sign the petition, and ask your friends and colleagues to sign as well.  I 
> think this should be cross posted on as many lists for blind people as 
> possible.  The petitioners hope to present the hospital with a hundred 
> thousand signatures, to show that people do care about ethics and the 
> value of life.
>
>
>
> 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.
>
>
>
> http://www.change.org/petitions/executive-vice-president-and-chief-development-officer-allow-the-kidney-transplant-amelia-rivera-needs-to-survive
>
>
> Jo Elizabeth
>
> "How far you go in life depends on you being tender with the young, 
> compassionate with the aged, sympathetic with the striving, and tolerant 
> of the weak and the strong.  Because someday in life you will have been 
> all of these."--George Washington Carver, 1864-1943, American scientist
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