Mom, Chrissy Rivera, wrote in a blog post that her daughter Amelia was denied the kidney transplant solely on the basis of Amelia’s mental retardation. Ms. Rivera’s family is prepared to donate a kidney, meaning that organ availability from the national donor list is a non-issue.
Ms. Rivera detailed a meeting she and her husband had with a CHOP social worker and physician on January 10, at CHOP’s Nephrology Department:
“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.
Wolf-Hirschhorn Syndrome (WHS) is a rare genetic condition, occurring in approximately 1 in 50,000 births. Although the symptoms of Wolf-Hirschhorn Syndrome vary with individuals, all people with WHS have profound developmental delays. A 2001 study published in the Journal of Medical Genetics estimated that approximately 21 percent of children with WHS die before they reach the age of two, but many individuals with WHS live to adulthood. The study showed that the person’s life expectancy depends significantly on how large a chromosomal deletion the patient has: for those with smaller deletions, the median survival rate is 34 years. For those with larger deletions, the median survival rate is 18 years.
Ms. Rivera’s blog post circulated rapidly among the special needs blogger community, and soon a petition was started on Change.org, requesting that CHOP allow Amelia to receive a kidney transplant. Many parents of special needs children, and disability rights advocates, took to CHOP’s Facebook page to register their disgust, alleging that CHOP is practicing eugenics. Other parents, including those with mentally-impaired children, responded that CHOP has always given their children compassionate care. However, the outraged comments far outweighed the ones supporting CHOP.
According to U.S. News and World Report, Children’s Hospital of Philadelphia is tied for the number one spot as the “nation’s best children’s hospital.” On their Facebook page, CHOP gave two statements. The first read, in part:
We want you to know that CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status. Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities and impairments.
The second statement said that:
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.
CHOP did not respond to Ms. Rivera’s statement that the nephrologist also said, “I have been warned about you. About how involved you and your family are with Amelia.”
The doctor also told Amelia’s parents that a kidney transplant would require Amelia to undergo a lifetime of daily medication, which can have serious side effects. Ms. Rivera wrote in her blog post:
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 CHILDREN WHO HAVE A TRANSPLANT TAKE THIS MEDICATION?”
“Yes, but it is different for her. She is already brain damaged and mentally retarded.”
According to a 2006 study, people with mental retardation have as good, if not better, outcomes with organ transplants. One reason given us that those with developmental delays usually live in group home or other supervised settings, where any needed medications are carefully dispensed and monitored.
I spoke with Ashley Moore, a public relations representative at CHOP, who said that the hospital is prohibited by privacy laws from discussing specifics of Amelia’s case. I was sent an email later in the day from Dana Mortensen, another CHOP PR representative, with the following statement:
“The Children’s Hospital of Philadelphia 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. We at CHOP are deeply committed to providing the best possible medical care to all children, including those with any form of disability.”
Ms. Mortensen said she expected CHOP to release more information later this evening and over the coming week.
For an update on this story, please see Update: Hospital to Meet With Family of Girl Denied Kidney Transplant.
(Photo Credit: Jeffrey M. Vinocur)