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    A Doctor Refuses to Okay Transplant for Child with Cognitive Disability (Updated)
    By Kim Wombles | January 15th 2012 11:29 AM | 15 comments | Print | E-mail | Track Comments
    About Kim

    Instructor of English and psychology and mother to three on the autism spectrum.

    Writer of the site countering.us (where most of these

    ...

    View Kim's Profile
    We're used to outrage in the disability community, of hearing or reading a story and running with it. Sometimes, it's to attack and condemn other parents or individuals, but sometimes, when the disability community works well, it's to gather together to bring about change, to fight for a family.

    This time, it's to protest a doctor at CHOP who told a family he would not recommend a transplant for their young daughter because of her cognitive disability.

    The mother, Chrissy, writes of this horrifying conversation at wolfhirshhorn.org in a post titled "Brick Walls." We can all imagine ourselves in this situation, but even this imagining cannot come close to the sheer terror, rage, and grief that Chrissy and her husband must have felt.
    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 community has rallied around this family, inundating CHOP's facebook wall with comments decrying this doctor's actions and demanding action. A petition has been set up at Change.org. People have been using their blogs to spread the word and advocate action. It is our community at its best. Let us hope that it will help this family quickly have a positive resolution. I encourage everyone to offer support to this family and to sign the petition. Like her page at facebook and show you care.

    It's too early to say whether CHOP's ethic committee will follow through with the doctor's recommendation, or whether the doctor will maintain his position. Ideally, the reaction from the community, the pressure on CHOP, will help Amelia get the transplant she needs.

    What follows are a list of the blogs dealing with this topic, which I will keep updated as I come across new blogs. 

    About.com Pediatrics


    Age of Autism 

    A Little Something For Me 1

    A Little Something For Me 2


    Another Suburban Mom

    A Tall Drink of Sweet Tea

    Autism Wonderland

    Autistic Hoya

    Backwoods Housewife

    Barriers, Bridges, and Books

    Be Well Philly

    Big Blueberry Eyes

    Bird on the Street

    BLOOM - Parenting Kids With Disabilities

    Busy At Home

    Compatible with Joy/ Trisomy 18 

    Countering...

    Creating my Own Little Nirvana

    Discovering Downs 


    Dominick Evans

    Donna Thompson

    Fighting Monsters With Rubber Swords

    Healing, Empowering and Thriving

    House of Sloth

    I Can Has Autism

    I Like it Frantic

    James's Project

    Jewish Journal

    Journeys with Autism

    Kidneys and Eyes



    Kristina Chew at Care2

    Life&Oh La De Dah

    Life With Joey 1


    Life With Joey 2


    Life With my Special K's

    Lisa Belkin (against Amelia being placed on a transplant list)

    Little Bit Quirky

    Love That Max (links to contact info at CHOP)

    Mom Blog

    Moonlit Lily



    Not Dead Yet

    Our Transplant Journey

    Parenting Isn't Pretty

    Patti's Blog/ Advocate for Elders, People with Disabilities and Their Families 


    People I Want To Punch In The Throat
    Penny's Peeps

    Pipecleaner Dreams

    Praying for Parker


    Raising Asperger's Kids

    Really What Were We Thinking

    ReunifyGally

    Simeon's Trail

    Social Security Disability and You

    Special Children at About.com

    Special Education Advisor

    Support for Special Needs

    Susan's Blog

    Susan Senator at Huffington Post

    Teaching the Boy

    The Loaded Diaper

    The 3rd 21st

    The A Word

    The Mentalist Mom 


    Three Puzzle Pieces

    Through A Looking Glass

    Uncommon Sense

    Transplant Headquarters

    Wade Today

    Who Says 8 Is Enough?

    you-leave-me-breadless


    Please let me know if there are blogs I've missed.

    From CHOP, new comment on their facebook page:

    Children's Hospital of Philadelphia 
    To our Facebook community:

    We hear you.

    We feel and understand your frustration, but we are unable to comment publicly on individual cases.
    Each child is unique, and our goal is always to provide the best possible medical care for each individual patient.
    Please know that CHOP strives to partner with families and make appropriate decisions based on input from many sources, none more important than the patient’s family.
    Anything less would be completely inconsistent with the values we work to uphold every day.
    We are also taking action to review all existing policies to make sure that they reflect the core values we live by, including our deep commitment to not discriminate in any way.
    The Children’s Hospital of Philadelphia is an institution. But more important, we are a team of men and women whose life’s work and greatest passion are the care of all sick children and the support of their families. To be entrusted with the care of these children is a privilege, one we take with the utmost seriousness.


    Let's hope that this will lead the ethics committee to careful deliberation and this doctor to reconsider his beliefs about those with cognitive disabilities.

    Supposedly, according to Lisa Belkin, Amelia can receive a live-donor transplant at CHOP. (updated as of 1/16/2012, 2:40pm central time). According to other stories, the Riveras have been asked to come in for a meeting.


    http://philadelphia.cbslocal.com/2012/01/16/childrens-hospital-denies-withholding-kidney-transplant-for-disabled-girl/ 

    "Rivera, a bit surprised by the huge response, has declined to comment further, saying she likes CHOP and is still hoping for a happy ending in her daughter’s case. And late this afternoon she told KYW Newsradio that the hospital had contacted her to arrange a meeting to discuss her daughter’s case further." 


    Contrary to Belkin's assertion that CHOP agreed to the live-donor transplant, by the way. http://www.huffingtonpost.com/lisa-belkin/denying-transplant_b_1207630.html 


    http://yourlife.usatoday.com/parenting-family/special-needs/story/2012-01-16/Team-Amelia-backs-transplant-for-special-needs-child/52603482/1
    Chrissy Rivera, a 36-year-old high school English teacher, says she hopes Amelia will continue to receive care at CHOP, where she's been a patient since infancy. "We've had many positive experiences at CHOP," she says. "This was one doctor and one social worker."
    But she says she and her husband, a real estate agent, understand Amelia could die in six months to a year if she does not get a transplant. Right now, Amelia, who also goes by "Mia," does not talk or walk, but does smile, play, roll around on the floor, interact with people and "love her two brothers to pieces," Chrissy Rivera says. "She's a magnet when people meet her."

     http://www.nbcphiladelphia.com/news/health/Mom-Claims-CHOP-Refuses-to-Give-Mentally-Disabled-Child-Transplant-Surgery-137437788.html

    The doctor told them that he would not recommend a kidney transplant for their young daughter because she is mentally disabled, Chrissy Rivera said.
    "And I said to the doctor, 'is this what you want us to let happen -- do you want us to let her die?' And he said 'yes,'" Rivera told NBC10 Monday.
    Three-year-old Amelia Rivera of Stratford, N.J. needs the transplant because of complications from Wolf-Hirschhorn syndrome, described by WebMD as "an extremely rare chromosomal disorder caused by a partial deletion (monosomy) of the short arm of chromosome 4."

    03/16/2012--CHOP and Amelia's parents have moved forward on the transplant process, and both parents are donor matches.


    Comments

    Gerhard Adam
    It's an unfortunate situation no matter how one looks at it.  This is a critically important discussion to have, but we won't.  We prefer to view it in terms of heroes and villains.
    kwombles
    Agreed. I'd prefer to not cast anyone as a villain and instead work to create a more enlightened approach in the medical field that values all human life and doesn't discriminate against those with neurological disorders.
    “Nothing in the world is more dangerous than a sincere ignorance and conscientious stupidity.” --MLK, Jr.
    Gerhard Adam
    I understand your point, but then who do we discriminate against?  According to the National Kidney Foundation statistics, for 2008, we averaged 12 deaths per day waiting for a transplant.  Who gets to decide who's worthy?  Is it truly to be based on the luck of the draw? 

    According to the site, more than 4,000 people are added to the waiting list each month.  So, while I can understand people being upset regarding this particular case, how do we decide these things?  In short, for every person we say yes to, there will be 10 that will die [just approximating here]. 

    In particular, while the doctor looks like he's being callous, the reality is that in 2008, every day [somewhere in the U.S.] some parents were told that it was too late for their child because they had died before a kidney became available.  That's the reality that no one wants to discuss.  So while people may want to put pressure on CHOP, they should also ask themselves, who will go without.

    kwombles
    Understandable--but in this case, the family made clear that they intended for a family member to donate, so she wouldn't, if there was a match, needed to go on the list.
    As a society, we need to have this discussion. We need to look for solutions. One of those solutions is for more people to become organ donors when they die. For anyone outraged that a person could be denied a life saving transplant, there's a simple thing that can be done: register to become an organ donor at
    http://organdonor.gov/.


    If the doctor truly is going to say no to a live donor transplant solely on the basis of a child having a cognitive disability, that should be unacceptable to a society that places value on all human life. We obviously don't have that kind of society and that should invoke, at the least, a measure of shame, and at the most, a commitment to be that kind of society, one person at a time--combining outrage with constructive action.
    “Nothing in the world is more dangerous than a sincere ignorance and conscientious stupidity.” --MLK, Jr.
    Gerhard Adam
    It's my understanding that the hospital has agreed to a transplant with a designated living donor.  I agree that this is the only sensible route to take and should not have been excluded during the initial discussions [I have no idea why this had occurred].

    As I said, my concern is that the underlying problems in this discussion are something that we will continue to ignore.
    For anyone outraged that a person could be denied a life saving transplant, there's a simple thing that can be done: register to become an organ donor at
    http://organdonor.gov/.
    Actually, I'll go a step farther and say that if you're outraged and are NOT an organ donor, then spare me the outrage.  You aren't helping and your opinion in this is worthless.
    dominickevans.com is a blog that has posted on it, as well!

    Thank you for writing this post and for helping to spread the word.
    While I completely understand a hospital's need to sometimes deny patients certain care, the idea that ANY institution would deny someone solely on "mental disabilities" is just morally wrong.
    A patients developmental status should not be a reason for a doctor to deny care.

    Now, if the doctor had said," I don't think her heart would survive the operation"... that, I could understand.

    kwombles
    http://philadelphia.cbslocal.com/2012/01/16/childrens-hospital-denies-withholding-kidney-transplant-for-disabled-girl/ "Rivera, a bit surprised by the huge response, has declined to comment further, saying she likes CHOP and is still hoping for a happy ending in her daughter’s case.  And late this afternoon she told KYW Newsradio that the hospital had contacted her to arrange a meeting to discuss her daughter’s case further."


    Contrary to Belkin's assertion that CHOP agreed to the live-donor transplant, by the way. _http://www.huffingtonpost.com/lisa-belkin/denying-transplant_b_1207630.html
    “Nothing in the world is more dangerous than a sincere ignorance and conscientious stupidity.” --MLK, Jr.
    kwombles
    http://yourlife.usatoday.com/parenting-family/special-needs/story/2012-01-16/Team-Amelia-backs-transplant-for-special-needs-child/52603482/1
    Chrissy Rivera, a 36-year-old high school English teacher, says she hopes Amelia will continue to receive care at CHOP, where she's been a patient since infancy. "We've had many positive experiences at CHOP," she says. "This was one doctor and one social worker."
    But she says she and her husband, a real estate agent, understand Amelia could die in six months to a year if she does not get a transplant. Right now, Amelia, who also goes by "Mia," does not talk or walk, but does smile, play, roll around on the floor, interact with people and "love her two brothers to pieces," Chrissy Rivera says. "She's a magnet when people meet her."
    “Nothing in the world is more dangerous than a sincere ignorance and conscientious stupidity.” --MLK, Jr.
    Gerhard Adam
    I read Susan Senator's response and was a bit frustrated by statements like this:
    Yes, that is the reality: to think of the greater good. And yet, it also feels a bit like Social Darwinism, or even eugenics. Why does a team of doctors get to decide that Amelia is less deserving than someone else? Are doctors always right?
    The obvious answer here is no, but what is the alternative?  Should we vote?  Do we decide based on finances?  These kinds of appeals don't help. 

    The reality is that based on the statistics, at least 12 people will die every day awaiting a kidney transplant.  That's reality.  There's no sugar-coating this. 

    Would people feel the same way if this were an individual serving a life-sentence in prison?  Perhaps a child-molester?  How about a drug addict?  How about a returning veteran from Iraq?  How about a gifted 12-year old?  How about a new mother or father?

    Consider these people and then pick one [because you can't save them all].  What bias was exercised in your choice?

    While I can fully appreciate how difficult Amelia's story is, I can't help but believe that the issue here isn't about cognitive abilities, but rather it's because we have a name and a story attached to it.  If we knew the names and stories of all those that died ... would that change anything?

    While Susan Senator's post raised many good and legitimate points about society, the problems, and our attitudes towards the disabled, it offers nothing in terms of actual discussion regarding what can or should be done.  Invoking terms like "Social Darwinism" or "eugenics" doesn't help the discussion. 

    Reality is that the majority of people waiting for a kidney will die.  That is the real world.  Anything that fails to address that point is a waste of time.

    NOTE:  I do recognize the difference between being on the waiting list versus having a living designated donor, so in that respect the situation is a bit different regarding CHOP.
    Bonny Bonobo alias Brat
    NOTE:  I do recognize the difference between being on the waiting list versus having a living designated donor, so in that respect the situation is a bit different regarding CHOP.
    Surely in Amelia's case this is the most important factor? That donor kidney is not generally available to all those other people in society waiting for donor organs, it is only being made available for donation from Amelia's family, specifically to save Amelia.

    Make love not war
    Gerhard Adam
    I agree and in that sense CHOP was specifically wrong, since it wouldn't have an impact on anyone else.  However, my comments are also intended for the larger subject beyond this case, where this kind of issue is sure to surface repeatedly.
    kwombles
    I agree that terms like "eugenics" (which this is certainly not) and "Social Darwinism" do not advance the conversation. We have two separate issues here: Amelia's specific case and the larger question of how to help those who need new organs get them.
    Certainly, having the personal story helps to rally the disability community, and if this were a case of her being placed on a transplant list, there would be different questions to be dealt with. Since it's a live-donor transplant, there are different issues.

    What we've got, Gerhard, is the same problem all the other social issues have: people need the individualization, the personalization, to care enough to act. One way to help individuals needing kidney transplants might be to create a matchmaking site, where people interested in being a live donor could see the individuals they are helping. Same thing for bone marrow transplants. But you know that kind of change will take individuals acting, building momentum, and it will be because of the personal story. 

    Change comes because an individual is effected. MADD grew out of moms who lost their children to drunk drivers. Autism Speaks (whether people like the organization or not) came because an autistic child's grandparents cared enough to put their time and money into it. Really monumental change comes because someone cares enough to move the world.

    “Nothing in the world is more dangerous than a sincere ignorance and conscientious stupidity.” --MLK, Jr.
    Gerhard Adam
    Well, Kim ... leave it to you to cut through my cynicism.  You are certainly correct and I can't find fault with anything you've said.
    kwombles
    Complete updated list with video embeds is available at http://kwomblescountering.blogspot.com/2012/01/when-disability-community-works.html.
    “Nothing in the world is more dangerous than a sincere ignorance and conscientious stupidity.” --MLK, Jr.