Brick Walls - docs deny developmentally delayed child life-saving treatment

[Amber]

This story makes me angry and very sad at the same time. Our society has not come so far after all.

- Amber

Brick Walls
http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls
by crivera75 on January 12, 2012 · 427 Comments · in Amelia, Featured Stories

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.

[longbow shooter]

The reason that this is so common is that there are more people in need of organ transplants than there are organs available. Therefor, doctors have to consider a lot more than which organ is a match for who. They have to consider things like life expectancy, quality of life and, often times, it comes down to the potential contribution to society. I'm sure the doctors in this story did not arrive at their decision lightly and I would not want to be the doctor who has to break the news to parents that for reasons other than the obvious physiological ones, their child will not receive a much needed organ transplant. To relate this story in a vacuum of tragedy and heartache is to ignore the fact that someone else will get the needed transplant and go on to live a happy and productive life as a contributing member of society. While one party mourns, another celebrates. When there is not enough of something to go around, some will have to go without. I'm glad its not up to me to decide who gets it and who does not.

[Ghostdog]

The reason that this is so common is that there are more people in need of organ transplants than there are organs available. Therefor, doctors have to consider a lot more than which organ is a match for who. They have to consider things like life expectancy, quality of life and, often times, it comes down to the potential contribution to society. I'm glad its not up to me to decide who gets it and who does not.

That is unless you have a large bag of money and celebrity like David Crosby or any of the other folks who seem to get pushed to the head of the line (even though we constantly hear the mantra of Age, Blood type, Height, Weight and Condition being the only factors involved in the selection process). Some are more equal than others! I'd be more comfortable with a blind lottery for the selection process if someone is going to decide and include judgements on future worth. No one can judge what a persons Earthly worth is or how much they give back to those around them or to society. Tough choice to make but suppose the leading candidate was a complete prick, mentally healthy etc etc but mean to his mother and kicked puppies. The guy that would scream "Get Off My Lawn" at the neighborhood kids. Would he be more worthy than an innocent (but damaged) child. They could take some lessons from the current political dog fight and get special interest groups to advocate for the people in need and against those that are to be deemed unworthy. Looks like the (claimed) criterion is pretty black and white as far as who is more worthy well lets go all reality TV and let the unwashed masses help with the decision. Lets bring back the equivilent of Queen and a Day, Extreme Body Make over, Biggest Winner, Slumdog Transplant Receipient. Lets get the public to vote on worthiness based on scripted presentations. The commercials and the small 800 number fee for voting could even fund the procedures. Great way to advocate for new shows too. Have Turtleman show up in the recovery room to cheer for the reciepient "Yeee Yeee Yeee Yeee Yeee---Yee Yee" then hand Dr House a live 65 pound snapping turtle and yell out, "Live Action baby"! fade to the credits!

[Tony1941]

From the story:
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.

Hepatitis C and HIV are not maladies that can be dismissed as a minor inconvenience. Yes! It is hard to accept that your child has been dealt a losing hand but the transplant that your child receives keeps it from another child that has much better odds for survival. I am quite sure that Steve Jobs would have paid any amount of money for a cure to his pancreatic cancer. Steve was dealt a losing hand. My sister in law was an intelligent, brilliant and a superb nurse but non-hodkins lymphoma cut her life off at 54. She had the best of medical care including experimental treatments. She like Steve Jobs was dealt a losing hand. The best man at my wedding was killed on his last mission in Laos at a place called Muong Kong Xedon. He left 3 children and a wife. I could spend hours listing people who met with untimely deaths or physical injuries that ended sports careers before they began but I will cut it short. I worked oh the resettlement of the Cambodian Boat people back in 1975. The stories that followed then would make the toughest Seal Team member to break down and cry.

We should realize that sooner or later we too shall die. Ponce de Leon's Fountain of Youth was and is a fable. Besides. Think what immortality would mean to you. Every couple of years, the medical team would wheel you in and replace whatever organs need to be replace, wipe away the wrinkles, tighten up the buns and miscellaneous body parts, and rejuvenate your brain. After a couple of upgrades and corrective maintenance procedures, you would be a couple thousand of years old wanting to commit suicide.

Not all Poker hands are winning hands. It is best to enjoy life without envy and a sense of entitlement.

I believe there are several books that cover the subject of advantages of immortality and the downsides of living forever even with a 25 year old body and mind.

[Amber]

That is unless you have a large bag of money and celebrity like David Crosby or any of the other folks who seem to get pushed to the head of the line (even though we constantly hear the mantra of Age, Blood type, Height, Weight and Condition being the only factors involved in the selection process). Some are more equal than others! I'd be more comfortable with a blind lottery for the selection process if someone is going to decide and include judgements on future worth. No one can judge what a persons Earthly worth is or how much they give back to those around them or to society. Tough choice to make but suppose the leading candidate was a complete prick, mentally healthy etc etc but mean to his mother and kicked puppies. The guy that would scream "Get Off My Lawn" at the neighborhood kids. Would he be more worthy than an innocent (but damaged) child. They could take some lessons from the current political dog fight and get special interest groups to advocate for the people in need and against those that are to be deemed unworthy. Looks like the (claimed) criterion is pretty black and white as far as who is more worthy well lets go all reality TV and let the unwashed masses help with the decision. Lets bring back the equivilent of Queen and a Day, Extreme Body Make over, Biggest Winner, Slumdog Transplant Receipient. Lets get the public to vote on worthiness based on scripted presentations. The commercials and the small 800 number fee for voting could even fund the procedures. Great way to advocate for new shows too. Have Turtleman show up in the recovery room to cheer for the reciepient "Yeee Yeee Yeee Yeee Yeee---Yee Yee" then hand Dr House a live 65 pound snapping turtle and yell out, "Live Action baby"! fade to the credits!

How one would or could assume to predict whether a transplant candidate would be a more productive, worthy member of society because of the results of an IQ test is beyond me. There are many who would score low on a verbal IQ test or are assumed mentally retarded who actually have quite brilliant minds, they simply have yet to find their voice (or someone willing to listen).

That other "normal IQ" transplant recipient could die in a car crash home from the hospital, or develop a liking for crystal meth the week after. Yeah, there are no guarantees in life but that does not mean it is okay to place a greater value on ar dollar amount or some useless prediction about which person will provide a greater ROI to society because of their presumed/assumed mental capacity.

That's just a really shitty way to look at people, and life.(And people say *I'm* negative!)

Just ask Carly.

http://www.youtube.com/watch?v=vNZVV4Ciccg <---around 3:15, I love this father so much.