Disabled Girl Denied Kidney Transplant by Doctor, Not Hospital, Parents Say

[okarol]

Disabled Girl Denied Kidney Transplant by Doctor, Not Hospital, Parents Say
Published January 19, 2012
Fox News Latino

A doctor and not the hospital denied 3-year-old Amelia Rivera a kidney transplant because she suffers from mental disabilities, her parents now say.
"It's one doctor who's never seen us who is making this call," Joe Rivera told The Associated Press on Wednesday. "We've had a great experience with (the Children's Hospital of Philadelphia). We're not against CHOP, but maybe something needs to be changed. One guy tarnished their reputation."
Rivera, 39, and his wife Chrissy plan to meet with hospital officials next week, amid a growing online furor that has experts warning the situation may be much more complex than many realize. The hospital has not commented on the child's case, citing patient confidentiality laws, but acknowledged the online discussion and said on its Facebook page that "we hear your concerns."
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Chrissy Rivera posted a blog entry last week that described an encounter she claimed happened at The Children's Hospital. She and her husband were there to discuss treatment for her daughter, Amelia, who was born with Wolf-Hirschhorn syndrome, a rare genetic defect that can cause physical and mental disabilities. Amelia will need a transplant in six months to a year.
Chrissy Rivera, 36, wrote that a doctor, whom she did not name, told her and her husband that Amelia wouldn't be eligible for a transplant because of her quality of life and her mental condition.
"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?'" she wrote. "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."
Joe Rivera said he was left thunderstruck.
"It just felt like that you were punched in the gut," he told the AP. "It was mind blowing how people think these days."
But he said that the experience was not necessarily indicative of the treatment they've gotten from the hospital.
Afterward, Chrissy Rivera, who teaches high school senior English, detailed the exchange on the blog.
Her story was seen by Sunday Stilwell, the mother of two severely autistic boys, and she began an online petition Friday, demanding that the hospital give a transplant to the girl. By Wednesday afternoon, 26,520 people had signed it.
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"I read Chrissy's original blog post, and I just cried. I couldn't believe it," said Stilwell, whose boys are 6 and 9. "I shared it on Twitter with all my followers and on Facebook."
Children's Hospital said in a statement that it "does not disqualify potential transplant candidates on the basis of intellectual abilities."
"We have transplanted many children with a wide range of disabilities, including physical and intellectual disabilities," it said, adding that it is "deeply committed" to providing the best possible medical care for all children, including those with disabilities.
It noted the debate on its Facebook page. "We're listening. We hear your concerns and take seriously your posts, emails and phone calls," it wrote, adding, "Please know that you have been heard and that your feedback is appreciated."
Stilwell has been in contact with the Riveras daily over the events.
"There's a lot of camaraderie" between parents of special-needs kids, Stilwell said. "Almost all of us, across the board, have experienced some discrimination. I've certainly had some bad run-ins with some certainly ignorant doctors, but nothing like this. That's part of the reason I did it. I couldn't actually believe this was happening."
The issue the Riveras face is not simple, said Arthur Caplan, director of the University of Pennsylvania Center for Bioethics. For example, the blog notes that Chrissy Rivera told the hospital that "we plan on donating" the kidney because they come from a large family.
"Most adults can't donate an organ because it won't fit" a child, Caplan said. "You're starting to say you're going to use another child as a living donor, and that's ethically really trouble."
The supply of organs for child transplants is "extremely limited," Caplan added. "So you have hard choices to make," he said. "Dialysis may be a better option."
However, in recent years some hospitals have pioneered ways to use an adult's kidney in a child.
According to the National Institutes of Health, 87,820 people were awaiting kidney transplants as of last February. The National Kidney Foundation, which seeks to enhance the lives of people affected by kidney disease, said 4,573 patients died in 2008 while waiting for kidney transplants.
A 2006 study from Ohio State University on kidney transplants for patients with mental disabilities found that the one- and three-year survival rates for 34 people were 100 percent and 90 percent, respectively.
"The studies reported good compliance with post-transplant medications due to consistent support from family members or caregivers," the paper noted.
The researchers added that previous controversies over mental disabilities and transplants led the Joint Commission on Accreditation of Healthcare Organizations to express concern that many people with disabilities are "denied evaluation and referral for transplantation."
Whatever the medical details of Amelia's situation, her mother's blog captured the anger of parents with disabled children who don't want outsiders to decide life and death issues.
"Do not talk about her quality of life," Rivera wrote of her exchange with the doctor last week. "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."
Mary Beth Happ, a professor at the University of Pittsburgh Center for Bioethics and Health Law, said that the issue of severe mental disability and kidney transplants has been a source of contention for nearly two decades.
"Co-existing health problems such as weakened immune system and/or heart disease, which are prevalent in (Wolf-Hirschhorn syndrome), are an additional risk that transplant centers and parents must consider," Happ wrote in an email.
But Happ and Caplan noted that it's virtually impossible to have a full discussion of Amelia's case because of medical privacy laws.
"We're seeing this more and more where very private, difficult medical decisions are debated in the media without the full facts," Happ said, adding that while the general discussion can be good, the risks of one side or another inflating the situation is problematic.
Caplan said he has heard of cases in which other transplant programs considered severe mental disability as a factor in transplants.
"With scarcity, social factors do count, with every transplant," he said.

Based on reporting by the Associated Press.
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Read more: http://latino.foxnews.com/latino/health/2012/01/19/disabled-girl-denied-kidney-transplant-by-doctor-not-hospital/#ixzz1jzUmKYMe

[MooseMom]

I've been following this story/debate for several days now (there is an expanded explanation on The Kidney Doctor)..

http://www.thekidneydoctor.org/2012/01/transplant-unplugged-should-mentally.html?utm_source=BP_recent


..and I have to wonder what would happen if you could hypothetically remove the intellectual disability, leaving behind only the physical impairments.  Would this little girl even then be a good transplant candidate?  I don't think so, but that's just my opinion.

[KarenInWA]

I work with a man who has a special needs daughter who is now a teenager. Her kidneys were removed when she was a baby, and she has been on PD ever since. I remember talking to him a few years ago about her, and he understood that she was not a candidate for transplant. I don't remember what her exact condition is, other than the PKD which her kidneys had. But, I do know that she does not talk. She is, however, a very happy child and now young woman who brings a lot of joy to her parents lives.

KarenInWA

[MooseMom]

But, I do know that she does not talk. She is, however, a very happy child and now young woman who brings a lot of joy to her parents lives.

I just have to respond to this.  It is these types of sweeping statements that serve to gloss over the difficulties that parents have when they have a special needs child.  I'm sure they have had joyful times with their daughter, and I don't mean to undervalue those times.  But I can guarantee you that they have spent hours and hours and hours for years and years and years wondering what in the world will happen to their non-verbal daughter once she reaches adulthood and they are gone?  There are few things more horrible than imagining your very vulnerable child, grown into adulthood, alone, without your guiding hands.  Who will look after her?  Will she always be happy?  Will she be lonely?

Most of us here on IHD know what it is like to have to fight for good care, and we are all reasonably smart and able and willing to advocate for ourselves.  Adults with intellectual disabilities are truly the most vulnerable amongst us; they have no loving parents to kiss and cuddle them and take care of them.  Those of us with special needs children are acutely aware that once these children become adults, compassion and MONEY is so very hard to find.

[sullidog]

I think the reason this makes me so mad is I am also blind which is a physical disability and if a doctor told me I couldn't do something I'd tell him to take it and stick it.

[Ladystardust24]

I would like to point out that, even though her intellectual disability, it's compounded with her actual illness. A illness that already has a low life expectancy. It is no doubt extremely sad. It's even almost unfair. But, sadly as we all here are well aware. kidneys are scarce. Between two children, they must pick the one who will potentially live a long life. Remember that her kidney disease is not her initial illness.

It is very sad. But I have to agree. If her transplant depended on going on the list, it would not be fair. If her parents hopefully are a match. I think YES very much yes.

It's completely reasonable they want their daughter alive as ling as they can.

[KarenInWA]

In regards to my co-worker's daughter, I believe the reason why she is not on the list or considered for transplant may have to do with the trauma of the surgery. She is comfortable with PD as it stands right now. She is used to it. I can't remember if she has a shortened life span, like this little girl does.  I do agree that this is an uncomfortable situation, but, based on her (Amelia Rivera) medical complications, I think it is the best decision. There is also the risk of her not surviving the transplant surgery, which would be even more tragic. We all know how big of a deal it is to qualify to be on the list. We have to be healthy enough to survive the surgery. Amelia obviously has the support system she needs for after the surgery (in the case of live donation, since that is really the only kind of kidney donor she should have). But, based on all the medical complications that come with her condition, would she survive the surgery? What are her chances? This, we do not know.

KarenInWA

[cariad]

"Most adults can't donate an organ because it won't fit" a child, Caplan said. "You're starting to say you're going to use another child as a living donor, and that's ethically really trouble."

Huh??
Oh, this is really contorting scientific fact. My donor was an adult, and not a small one, and I am quite certain he had the kidney to match. This family is saying no such thing, what an unfair accusation to level at these parents who have enough problems at it is. This Arthur Caplan is not a doctor, is he.... Perhaps he should stay well clear of trying to sound like an authority on medical matters. 

"With scarcity, social factors do count, with every transplant," he said.

Well, now I need a lie-down. So someone's finally come out and said it - it's the life or death committees all over again, with somewhat lower stakes, but still.

This is one of our country's top bioethicists. People will actually listen to him and he has garbled the message and suggested to the world that these parents want to push a child to donate. Christ. If she is medically too poorly to undergo a transplant, then fine, but they have made a hash of this if any doctor was commenting on the child's quality of life.

[Rerun]

I shouldn't throw this in here but STEVE JOBS ..... knowing he had cancer got a liver transplant.    He lived for 2 years after that.  OK, so was that a wasted liver?  What part of "money" did that play?  I'm thinking if these parents were rich or were to win the lottery their daughter would get her kidney.  It is not supposed to be that way in the United States...... but.....  Steve Jobs ....

It should be a level playing field where we could debate this.   But, the fact is if they had the money it would not be an issue.

Comments?   

[KarenInWA]

I shouldn't throw this in here but STEVE JOBS ..... knowing he had cancer got a liver transplant.    He lived for 2 years after that.  OK, so was that a wasted liver?  What part of "money" did that play?  I'm thinking if these parents were rich or were to win the lottery their daughter would get her kidney.  It is not supposed to be that way in the United States...... but.....  Steve Jobs ....

It should be a level playing field where we could debate this.   But, the fact is if they had the money it would not be an issue.

Comments?

Good point, Rerun! I thought if you have had cancer, you have to wait 2-5 years before being listed? Didn't Jobs have cancer at the time of his transplant? It certainly wasn't "2-5 years" ago!!!

KarenInWA

[glitter]

I shouldn't throw this in here but STEVE JOBS ..... knowing he had cancer got a liver transplant.    He lived for 2 years after that.  OK, so was that a wasted liver?  What part of "money" did that play?  I'm thinking if these parents were rich or were to win the lottery their daughter would get her kidney.  It is not supposed to be that way in the United States...... but.....  Steve Jobs ....

It should be a level playing field where we could debate this.   But, the fact is if they had the money it would not be an issue.

Comments?

Good point, Rerun! I thought if you have had cancer, you have to wait 2-5 years before being listed? Didn't Jobs have cancer at the time of his transplant? It certainly wasn't "2-5 years" ago!!!

KarenInWA

My husband had cancer, he only had one kidney and he had cancer in it, he was cured of cancer, we tried 4 different possible hospitals here in florida- they ALL said NO transplant until 5 YEARS cancer free, how did Steve Jobs get a transplant? I guess if your filthy rich its different. My husband died in year three.

[Lindia]

With scarcity, social factors do count ....   WHAT  !! this is a statment from  Arthur Caplan, director of the University of Pennsylvania Center for Bioethics.   Seriously ---  he is probably speaking the reality - but how is that ethical ? ! ?    I've been following this story also.   I would think that the large family could be tested - and if someone was a match, why wouldn't the parents try for it.   If the doctors were to make the case that her heart wouldn't stand the strain of a transplant,  I could understand the hospitals position. 

[Ladystardust24]

I shouldn't throw this in here but STEVE JOBS ..... knowing he had cancer got a liver transplant.    He lived for 2 years after that.  OK, so was that a wasted liver?  What part of "money" did that play?  I'm thinking if these parents were rich or were to win the lottery their daughter would get her kidney.  It is not supposed to be that way in the United States...... but.....  Steve Jobs ....

It should be a level playing field where we could debate this.   But, the fact is if they had the money it would not be an issue.

Comments?

I sadly agree. But it does. With enough money, people can get what they want.

I mean, personally. I was a bit insulted about the whole Natalie King Cole situation. If it had be anyone else, society would have been all against it. But she is who she is.

It's in many ways not a fair system. And that's sad.

[okarol]

Original blog post by Mia, Amelia's mom:

Brick Walls

by CRIVERA75 on JANUARY 12, 2012 ·    818 COMMENTS ·

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.wolfhirschhorn.org/2012/01/amelia/brick-walls/