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Transplants for patients with disabilities: One mom’s story

With far fewer hearts, or lungs, or kidneys than are needed, transplant programs use a variety of measures to match organs with recipients. And for some transplant programs, that means ruling out potential recipients with disabilities such as autism.

That's the news that Oregon mom Sunshine Bodey received when she learned that her nonverbal autistic son needed a heart transplant: No, not here, his disability is too severe.

Bodey wasn't about to sit back and watch her son die. So with the help of a physician at a local hospital, they found another hospital, Lucile Packard Children's Hospital Stanford, where her son Lief could receive care that would keep him alive until that needed heart arrived. She tells her story in a recent Washington Post opinion piece:

Lief’s medical odyssey spanned a year of continuous hospitalization, nearly half a dozen open-heart surgeries and countless grueling procedures. No one knows what someone is capable of until they are fighting for their life. Throughout, Lief defied everyone’s expectations and acquired abilities such as improving his communication so that he was fully able to participate intellectually in his care. He was 100 percent compliant with his treatments. His remarkable endurance and patience exceeded those of most neurotypical adults. The culmination of his medical journey was receiving a precious gift of life: a human heart. He was likely the first person with severe autism to undergo a heart transplant. Sadly, he’s likely not the first person who has needed one.

Changes are underway. Bodey's activism spurred the passage of a law in Oregon that prohibits health care insurers and providers from discriminating against organ transplant patients with disabilities. And for adults, Stanford researchers have created an assessment tool to help evaluate the non-medical readiness of potential candidates. It looks at a candidate's social support and factors such as addiction or healthful habits that would affect how likely he or she would be to successfully care for the new organ. The tool could be used to highlight areas where a candidate needs to focus to strengthen his or her shots at an organ.

Bodey writes:

Though we’ve made enormous strides in changing the conversation, there is so much more we need to do to stop discrimination. Adults and children with disabilities in need of organ transplants should be afforded greater legal protections. Their lives are inherently worth saving.

Previously: Are donor hearts getting wasted?Moving the needle on organ donation and Patients with "invisible illnesses" speak out about challenges in their communities and workplaces
Photo by stux

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