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 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.
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.”
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.
Age of Autism
A Little Something For Me 1
A Little Something For Me 2
Another Suburban Mom
A Tall Drink of Sweet Tea
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
Creating my Own Little Nirvana
Fighting Monsters With Rubber Swords
Healing, Empowering and Thriving
House of Sloth
I Can Has Autism
I Like it Frantic
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)
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
Praying for Parker
Raising Asperger's Kids
Really What Were We Thinking
Social Security Disability and You
Special Children at About.com
Special Education Advisor
Support for Special Needs
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
Who Says 8 Is Enough?
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.
"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
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."
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.