When the Disability Community Works

We're used to outrage in this 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, inundatingCHOP'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.

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 

Autistic Hoya

Big Blueberry Eyes

Bird on the Street

BLOOM - Parenting Kids With Disabilities

Donna Thompson

Healing, Empowering and Thriving

Jewish Journal

Journeys with Autism

Kidneys and Eyes

Kristina Chew at Care2

Life With my Special K's

Little Bit Quirky

Love That Max (links to contact info at CHOP)

Moonlit Lily

Not Dead Yet

Parenting Isn't Pretty

Penny's Peeps

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's Blog

The Loaded Diaper

Three Puzzle Pieces

Uncommon Sense

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.