A doctor at Children’s Hospital of Philadelphia told the family of a 3-year-old girl that he would not perform a kidney transplant on the girl because she is mentally disabled, according to the family. Amelia Rivera will die if she does not get a new kidney and the doctor knows that, the family says.
The hospital relented with two statements only after the child's mother Chrissy Rivera wrote a blog post that sparked outrage and thousands of people signed an online petition.
"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 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."
At first Chrissy and her husband Joe thought the doctor was saying he wouldn't put Amelia on a list to receive an organ donation. The couple reassured the doctor that a family member would be donating. According to Chrissy Rivera, the doctor said that made no difference. He would not recommend the transplant team perform the actual surgery.
“I have been warned about you. About how involved you and your famliy are with Amelia," the doctor told the Riveras, according to Chrissy's blog.
In the blog post, Rivera claims that this dialogue between her and the doctor occurred:
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“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,” Rivera claims the doctor said.
Amelia’s father Joe told NBC10 he was shocked. “I can’t believe the way they did that.”
According to the couple, 15,000 people signed a spontaneous internet petition, calling for a transplant for Amelia.
“It’s wonderful to see how many people support us and we cried when we read some of their stories and we saw that we’re not the only ones this has happened to” said Chrissy Rivera.
After countless people read and reposted the blog post from wolfhirschhorn.org, CHOP put this statement on its Facebook page:
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.
The Riveras told NBC10 they got a call from CHOP on Sunday night.
“They apologized for what happened. They didn’t necessarily have any answers. They did agree with us that some things need to be changed,” said Chrissy Rivera.
The Riveras said the hospital invited them to meet with the organ transplant team.
CHOP issued this statement to NBC10 on Monday:
"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."
The Riveras are hoping to test other family members, to see if anyone is a match for Amelia.
