Healthcare News & Insights

Mom claims hospital denied transplant over child’s disablity

Is an intellectual disability reason enough for an organ transplant to be denied? A developing case highlights the clash of several ethical dilemmas.

Children’s Hospital of Philadelphia (CHOP) is finding itself on the wrong end of the Internet outrage machine after a patient’s mother wrote a blog posting that claims the hospital turned the child down for a kidney transplant solely because the child is intellectually disabled.

The child, two-year-old Amelia Rivera, was born with Wolf-Hirschhorn Syndrome, which commonly causes severe mental and physical delays, seizures and heart damage. Kidney damage is a less common, but known, symptom.

In her emotional post, Rivera’s mother claimed that a doctor at CHOP said her daughter wouldn’t qualify for a transplant solely because of her developmental delays and “quality of life.” Rivera also painted a picture of stunning callousness. According to her post, “I said [to the doctor] so you’re saying in six months to a year when her kidneys fail you want us to let her die? And he said yes.”

The information we have is one-sided, as HIPAA regs don’t allow the hospital to give its version of the conversation, or the reasons behind the decision.

But in the wake of emails and Facebook postings criticizing the hospital, CHOP released a statement that it didn’t discriminate in any way against Rivera and that mental and physical disabilities aren’t considerations in transplant decisions. The hospital also noted that it has in the past performed many transplants on many children with a variety of disabilities.

Medical reasons ignored by community?

But even with medical details unavailable, there are hints even in Rivera’s post that there are valid medical reasons for denying the transplant. The necessity of the transplant itself isn’t clear: Rivera claims the transplant is “life-saving,” and insists repeatedly in her post that she will stop at nothing to make sure her daughter receives a transplant. But she didn’t mention in her post or subsequent media interviews why dialysis isn’t even being considered.

Additionally, the family planned to use a privately donated kidney, so qualifying for the organ transplant wait list wasn’t an issue.

Most importantly, Rivera acknowledges that her daughter has had prior heart surgery and has seizures. Both of which make the complicated and intense regimen of medications post-transplant both hard to manage and potentially dangerous.

Those key details are being routinely skipped over by the family’s supporters, who have launched a social media campaign to urge CHOP to change its ruling. CHOP has agreed to meet with the family later this week to discuss the matter further.

It’s hard not to empathize with a very sick two-year-old girl and the parents who clearly love her. But not every treatment is a viable option for every patient. The case highlights the on-going need for health care professionals at all levels to improve their ability to communicate the pros and cons of specific treatments and to relay that information in a way that doesn’t upset patients and their families who may already be emotionally frayed.

 

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  1. […] a three-year old on whom it refused to perform a kidney transplant. The apology is in response to the media firestorm that erupted after the Rivera family went public with a blog post claiming the hospital denied their daughter because she has “mental […]

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