This is not too dis-similar as to how they are treating my 9 year old mother who has an infection on her leg.
Posted on 01/25/2012 9:09:53 PM PST by Tolerance Sucks Rocks
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.
PING!
This is not too dis-similar as to how they are treating my 9 year old mother who has an infection on her leg.
9=98
Prayers for you and your husband and little Amelia.
May the doctor and the social worker be mistaken.
Vile, stinking murderers.
“This is not too dis-similar as to how they are treating my 9 year old mother who has an infection on her leg.”
Does she have diabetes?
When I had finished reading this shocking account I was surprised to see there were no comments. Yet I too didn't know what to say other than these parents have my deepest sympathy and will be in my prayers. Your suggestion gives a strong and good recourse politically speaking.
I understand now how Obama Care and their Teams/Panels are already strangling the future life and wellness from sick children. Obama Care needs to be repealed!
My 54 year old special needs brother-in-law lives with us.
I can relate to this story and the medical struggles they are going through.
sick and wrong !!
No. She injured her leg on the car door, didn’t treat it, and now she has cellulitis. She’s 98, stubborn, and frail.
If one accepts the basic premise of right to life, then one accepts the responsibility of dealing with the good and the difficult. Right to life is for everyone, not just a favored few.
That’s too bad.
My dad is 84, has Alzheimers disease, an erratic heart, and recurring bladder infections due to a swollen prostate.
He almost died the day after this past Christmas from another bladder infection. His heartbeats were terribly erratic - one heart valve was fluttering at more than 300 beats per minute while the other three were keeping steady at around 70 beats per minute - and his fever was 105 degrees. It was ten days in the hospital and twenty-one days in a rehab center. He is now out and back in assisted living, but he can barely walk and is much debilitated compared to before Christmas. And his memory has worsened.
The doctor says the recurring bladder infection is now caused by bacteria resistent to anti-biotics. He was on intravenous anti-biotics for thirty-one days. The next time it breaks out he could die, and I don’t expect him to make it through this year.
Please talk to the folks at St Jude in Memphis. I can’t believe they would turn you down. They are all about saving kids, and doing it for free if you don’t have the insurance or money.
They are threatening to put her back in the hospital. Threatening to amputate her leg. Threatening to make her move into an assisted living facility. They are bullying her, and she doesn’t like it one bit. I’m 2000 miles away and helpless until I can get out there, but I have my own problems which is why I’m here and not there.
I went to my ENT...I have spent $12,000.00 on hearing aids and was still having difficulty hearing and I was so frustrated as was my family...My ENT doctor was a Saint, she tested me for a cochlear Implant and she said she thought I was a candidate, she contacted a surgeon who was her professor to see if he would check me out...I only have Medicare and my secondary Ins. she did ALL the arranging for me from this small Pennsylvania town in Somerset PA. where Rick Santorum kicked off his Presidential run...
UPMC contacted me, set up appointments for me and my son, who is a medical illustrator, went with me to talk for me...
I was tested and with no questions to money or anything the wonderful Doctor set up a surgery schedule for me
My first surgery was March 15, 2010 and successful, painful and a month of healing which I will never complain about... and on April 15, 2010 while Americans were busy filling income taxes I got to hear clearly in my left ear for the first time in eleven years.
the year went quickly and at my one year check up the doctor asked if I was ready for my second CI where I would be bilateral cochlear implant....
and on October 10, 2011 I had my second surgery and now it has been almost four months and I am hearing with two ears once again...It is so wonderful and am blessed that several doctors worked together to complete my path to hearing again....
so to this dear family I suggest you try to get doctors to help you through the legal paper work and demand care for this child, My God this is American, People travel all over the world to come here for medical care, surely we can take care of one small girl♥..make a fuss and make it LOUD.....
just my humble opinion...prayers for all involved.
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