Lily Parra, a four-month-old infant needs a heart transplant. But, she will not get one because she may have a disability. Doctors took Lily off the transplant list when they discovered fluid on her brain, reports the Washington Post.
Lily’s mother started a petition asking the transplant team at Loma Linda University Children’s Hospital in California to put Lily back on the transplant list. Lily has a heart defect. Before her birth, doctors told Lily’s mother Stephanie that Lily might live for just a few hours after birth. Months later Lily is still fighting for life. After testing Lily’s suitability for a heart transplant, doctors said she has diffuse cerebral dysfunction. They removed Lily from the transplant list because she might be developmentally disabled.
Diffuse cerebral dysfunction is damage to the brain. The term is broad and does not show the effect this damage has on brain function or the particular parts of the brain affected. It is unclear how this damage affects Lily.
A letter from Loma Linda University’s Children’s Hospital, on Lily’s change.org page, further explains why Lily was not put on the transplant list. The letter states,
The cardiology team performed an initial screening for suitability for heart transplant evaluation and determined that Priscilla was not a candidate for evaluation because of chromosomal abnormalities affecting longevity.
Chromosomal abnormalities is a broad term including many conditions such as Down syndrome, Turner syndrome, Jacobsen syndrome, Wolf-Hirschhorn syndrome, etc. Her doctors state that whatever chromosomal abnormality Lily may have affects her life expectancy.
Essentially Lily’s doctors are saying she is not eligible for a transplant because of her disability. Why does a developmental or cognitive disability prevent Lily from getting a heart transplant? Her life may be different because of her disability, but Lily could still enjoy life. Even if Lily’s life expectancy is diminished, shouldn’t she live the best life she can? Having a heart transplant affects children’s life expectancy anyway. In addition, people waiting for organ transplants often have diminished life expectancy, which necessitates the transplant.
Denying a transplant to Lily is discrimination. It is not the first time a hospital denied a transplant to a patient because of intellectual and/or developmental disabilities.
Amelia Riviera, who has Wolf-Hirschhorn syndrome, was denied a kidney transplant because she was “mentally retarded” according to ABC News. After an online petition and public campaign, Amelia received the kidney from her mother.
The Pittsburgh Post- Gazette reports that a 23-year-old autistic man, Paul Corby, was denied a heart transplant because of autism. His mother commented, “It makes you think society feels they’re not worthy of saving.”
Maverick Higgs was born with a serious heart defect, according to CNN. After two unsuccessful heart surgeries, doctors told his parents he was eligible for a transplant at New York-Presbyterian Hospital. A few days later the hospital changed its mind stating a genetic test showed Maverick had Coffin-Siris syndrome.
The hospital told Maverick’s parents he was no longer eligible for a transplant because children who have Coffin-Siris syndrome have “compromised immune systems and are at a high risk for tumors and infections.” Even when Maverick’s parents confronted the hospital with evidence that children with the syndrome do not have compromised immune systems, it refused to consider Maverick as a transplant candidate.
These examples are part of a much wider problem. A 2013 analysis by the Autistic Self-Advocacy Network (ASAN) found “widespread explicitly discriminatory practice” against people with intellectual and/or developmental disabilities. Some institutions exclude candidates with intellectual and/or developmental disabilities from their transplant lists claiming they cannot follow post-operative procedures. In other cases, hospitals use neurodevelopmental status as the basis for exclusion.
The United Network for Organ Sharing (UNOS) governs organ transplantation in the U.S. Its main purpose is “to ensure ethical and fair distribution of organs.” UNOS maintains the national transplant waiting list. When an organ is available for transplant, it matches the organ with a recipient using its national computer system.
To get on the UNOS list requires two steps. First, a doctor refers a patient to a transplant facility. Then, a hospital’s transplant team refers the patient to UNOS. Getting these referrals is a hurdle for people with disabilities. Each transplant facility has its own evaluation process and criteria. In some cases, one facility may decline to put a patient on the transplant list and another may find the patient suitable for transplant.
The lack of uniform criteria among referring doctors and facilities is inconsistent with UNOS’ goal of a fair and equitable distribution of organs. The current system lets doctors and hospitals decide whose quality of life is more valuable. Is a year of the life of a child with Down Syndrome worth less than that of a child without a disability? Some doctors think so.
Until uniform criteria are set for all transplant centers, discrimination against people with disabilities will continue. Although we cannot replace a doctor’s medical judgment about the suitability of a transplant candidate, a mechanism must be in place to allow patients to challenge the basis for this judgment.
A version of this article was published on Examiner.com.