1/15/2012

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, 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.

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

ABC News

A Blog About a Bloke--Living With WHS

About.com Pediatrics

Accepting Abundance


A Tall Drink of Sweet Tea

Autism Wonderland



Discovering Downs


Dom Giordano Show

Dominick Evans

Fairfield Patch


I Can Has Autism

I Like it Frantic

James's Project



Life With my Special K's

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

Little Bit Quirky





The Domestic Goddess

The Flight of Our Hummingbird

The Guardian



Who Says 8 Is Enough?

Who We Are (please note that CHOP has not denied the transplant--the ethics committee hasn't met to discuss Amelia's case)

Why I am Catholic


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."



View more videos at: http://nbcphiladelphia.com.

Update from Wolfhirshhorn.org:

Hello wolfhirschhorn.org followers:
Over the course of the last week, there have been new updates on the situation with Mia and the Rivera's status with CHOP. Over the weekend, a meeting took place between a number of the key leaders of CHOP, the Rivera's and wolfhirschhorn.org. The purpose of the meeting was to get an understanding of the chain of events that led to the "Brick Walls" posting. The meeting lasted a little over 90 minutes and the Rivera's had an opportunity to tell their side of the story and the related concerns about Mia's needs and how CHOP handled the situation. CHOP agreed that the system is broken and that they are taking steps to fix the process. In addition to addressing Mia and the next steps with her transplant discussions, a few suggestions were made to CHOP about their involvement in a more macro view of awareness around transplant rights for the disabled, and public and medical community education around the "mentally retarded" phrase. CHOP agreed to follow up and communicate their action items by the end of this week. 
Mia and the Rivera's are planning a visit to CHOP in the near future to determine CHOP's role in her transplant and her on-going medical care. Once that meeting takes place, we will issue a statement on the status of Mia, her care, and CHOP's involvement moving forward.
To keep up to date on details of this story, LIKE us on Facebook (https://www.facebook.com/wolfhirschhornawareness) and follow us on Twitter (@wolf_hirschhorn).
Thanks!

13 comments:

usethebrainsgodgiveyou said...

Jesus, what an anomaly...a parent who would fight for their child's life. ("We've been warned about you.")

A family friend's last pregnancy was twins. The boy died, and her daughter was Down Syndrome. She was bitter for about 6 months, not handling it well. Amy is about 40 years now, and her mom had given her one of her kidneys years before she (her mom) died.

"Her sister's can give her another if she needs it." Gerry said.

What a change.

Life has many lessons, and the best are often from those who need our unconditional love and care.

Sunday said...

THANK YOU!!!

Andrea S. said...

I assume you know that there is also another list of links to blogs on the Amelia Rivera situation at

http://specialchildren.about.com/b/2012/01/13/hospital-denies-kidney-transplant-because-of-girls-intellectual-disability.htm

I have also blogged on this, with links to an on-line petition and various sources of information, at http://reunifygally.wordpress.com/2012/01/15/disability-the-quality-of-life-and-amelia-rivera/

K Wombles said...

Andrea,

Yes, that's linked under Special Children. Thanks.

Added your piece to the post, as well.

Sirenity said...

Wonderful job, to all of those out there that posted and rallied to help this child's family be heard.
Sometimes the internet is a good thing, huh?

HUGS!

Dana @ ReallyWWWThinking? said...

It takes a village!!!

Tara said...

Please add mine: www.simeonstrail.blogspot.com
I wrote an open letter to the MD of Kidney transplants @ CHOP.
Thanks!

K Wombles said...

Tara, done.

Anna said...

I have also blogged about this as another parent of a child with WHS.
www.blogaboutabloke.com Thanks!

K Wombles said...

Got you added, Anna. Thanks.

Jen Giroux said...

Add the blog "A walking Contradiction": www.afineconundrum.blogspot.com

Ellen said...

Thanks for this. What happened to Amelia is mind-boggling awful, but the rallying of our special needs community has been amazing.

nhalkyard said...

As a mother to a child with Wolf-Hirschhorn Syndrome (4P-) I am completely appalled at this decision!
We depended on CHOP and it's specialist to keep our daughter Lianna alive for the first three years of her life. She was frail, she devel...oped a seizure disorder at eight months of age, she had severe esophageal reflux, she required a feeding tube to be permanently placed so that she could grow and gain strength, and she required open heart surgery to repair a hole between her upper atria. All of these things were diagnosed and treated at CHOP.
Had any ONE of these things not been attended to, she would not have survived.
Our daughter also has vescicoureteral reflux (urine moves backwards toward the kidneys) which is a common occurence with Wolf-Hirschhorn children. The ensuing kidney infection often cause kidney damage and can lead to kidney failure. Are we to expect that if our own child develops an infection that causes her kidneys to fail that she will be refused care?
Please sign the petition to get Amelia the care she needs.