In an incident that has sparked a national ethics debate, parents of a 3-year-old who was denied a kidney transplant by a Philadelphia hospital say they were told their daughter wasn’t eligible because she suffers from mental disabilities.
Chrissy Rivera’s daughter Amelia was born with Wolf-Hirschhorn Syndrome – rare genetic defect that can cause physical and mental disabilities and leads to an early death for many. In a lengthy post on a website for parents of children with the condition, Rivera detailed her shock when she said she and her husband were told that her toddler would be denied a critical kidney transplant because she was deemed “mentally retarded.”
“We are in the year 2012 and my child still does not have the right to live, the right to a transplant, because she is developmentally delayed,” Rivera wrote, kicking off an Internet firestorm of outrage.
On the Huffington Post, both sides of the argument were vigorously debated with lead parenting blogger Lisa Belkin writing that she didn’t think the child should get a transplant, saying that the child “is being denied a donor transplant because she has a cascading syndrome that will shorten and limit her life, meaning that the kidney will not ‘save’ her in the way it might someone who starts out healthier.”
“In cold clinical terms this means that everything it takes to undergo a transplant – the medications, the repeated biopsy procedures afterwards, the constant monitoring and machinery – are difficult and sometimes impossible compared with a child who is less impaired,” Belkin continued. “The less mobile a patient is, the far greater the likelihood that she will develop an infection, or pneumonia, or a host of other complications that make it probable that the transplant will eventually fail. Which, in those same cold clinical terms, would make it a waste of an organ.”
But in response, Susan Senator asserted that to deny the child a kidney because of her condition is akin to eugenics.
“Why does a team of doctors get to decide that Amelia is less deserving than someone else,” wrote Senator, the mother of an autistic child. “Are doctors always right? History is full of mistakes in the medical profession. The story of the human race is one of trial and error. Evolution itself is trial and error . . . And that, perhaps, is what has me so upset over Amelia’s doctors: the implication that some humans are better than others, when in fact, we are all a mess.”
Noting that a “disability advocate” had pointed out that the hospital’s Patient Bill of Rights – “the right to: receive care, treatment and services regardless of race, color, age, sex, national origin, religion, handicap, disability, sexual orientation, who pays for your care or your ability to pay” – doesn’t seem to apply to Amelia, Senator wrote “We say we want all people to be equal, but do we act that way when it comes to disability?”
“These are wrenching decisions,” wrote the Washington Post’s parenting blogger Janice D’Arcy. “Doctors have to choose whose life is more likely to benefit from the extremely scare organs available. Available organs are even more scarce for children because they are harvested from cadavers and, as another ethicist told me, ‘children don’t drive drunk or ride motorcycles.’”
D’Arcy said the that the hospital, Children’s Hospital of Philadelphia wouldn’t “confirm nor deny” the veracity of the mother’s blog post, adding that, “The [hospital’s] statements also deny that hospital officials disqualify patients for transplants ‘on the basis of intellectual disabilities.’”
In light of the online rage and media attention, hospital officials have said that they’ll meet with the family again to discuss the matter, the Philadelphia CBS affiliate reported.
What do you think? Should people with disabilities be eligible for organ transplants?