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July 25, 2014, 12:45 am

Anger follows CHOP’s ‘no’ to girl needing transplant

A decision to deny a three-year-old girl a kidney transplant due to a mental disability has sparked controversy.

A doctor at the Children’s Hospital of Philadelphia has allegedly denied Amelia Rivera of New Jersey from undergoing a transplant procedure that her family says she needs to survive.

Amelia has Wolf-Hirschhorn Syndrome, a rare genetic defect that can cause physical and mental disabilities. She will need a transplant in six months to a year.

Amelia’s mother, Chrissy Rivera, posted a blog entry last describing an encounter that happened with a doctor, who she did not name, at CHOP. Rivera and her husband visited CHOP to discuss Amelia’s treatment. According to Rivera, the doctor said Amelia would not be eligible for a transplant because of the quality of her life and her mental condition.

“I put my hand up. Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded,” she wrote.

“I began to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.”

Rivera’s plight has set off an online fervor — causing Amelia’s fate to be debated in the media.

The situation spurred Sunday Stilwell to launch a campaign for Rivera to receive her transplant on Change.org.

“As a mother of two sons on the severe autism spectrum, I could not sit back and let anyone tell another special needs parent that their child is not worthy of living,” Stilwell said in a press release.

“I read Amelia’s story and imagined myself sitting across the table from a doctor and social worker telling me my boys’ lives have no value — and I knew I had to do something to make sure this never happens to another family.”

As of Jan. 19, the campaign netted more than 31,000 signatures.

According to published reports, the Riveras will meet with hospital officials next week.

Hospital officials declined to speak about Rivera’s specific case, citing patient confidentiality laws.

However, CHOP issued a statement in regard to its transplant policy.

“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,” CHOP said.

CHOP has received a flood of emails, phone calls and comments on its Facebook page from people calling for the hospital to allow Amelia to undergo the transplant procedure.

CHOP issued a statement on Facebook in response to the controversy.

“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,” CHOP said.

“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 controversy comes at a time when more than 90,000 people are on the waiting list for a kidney, according to the Organ Procurement and Transplantation Network.

 

Contact Staff Writer Ayana Jones at (215) 893-5747 or This email address is being protected from spambots. You need JavaScript enabled to view it. .