Friday, December 6, 2013

Maverick Higgs, Healthcare Justice, and Transplant Discrimination

Yet again, our culture is quietly suggesting that the lives of people with disabilities don't have the same value as the lives of others. I wish I didn't have to comment on this story because I wish these stories didn't exist. But if I don't, who will? Recently, I came across the story of infant Maverick Higgs, a baby born with a severe heart defect called hypoplastic left heart syndrome in 2012, and still after two surgeries at Morgan Stanley Children's Hospital in New York City, he remained in heart failure. Maverick also has a genetic disability called Coffin-Siris Syndrome, which causes neurological and developmental delays, including the possibility of an intellectual disability. When Maverick was found to need a heart transplant to save his life, the doctors there deemed him ineligible for the surgery on the basis that the genetic defect would put him at risk for tumors and other infections. When his mother did her own research and contacted an expert on Coffin-Siris, the information was proven to be false. Coffin-Siris did not normally cause immunosuppression and was not an ethical reason to be denied a transplant. What we have here is a case of discrimination.
The fact that the probability of severe disabilities later in life caused this child to be deemed ineligible for transplantation is a problematic statement about the assumptions that even our most skilled healthcare professionals harbor about the quality of life of people with disabilities. Maverick’s story should scare you, because it's another case that clearly demonstrates the danger of determining the value of another person's life based on what you think you know. Rather than treat Maverick as a young person with a hopeful future will happens to have a disability, he was dismissed by those whose vision of his future was too narrow, and plagued by the low expectations that haunt today's disabled youth.
When his parents sought other help at Children’s Hospital of Philadelphia, the doctors stated similar reasons for transplant denial, stating that Maverick’s syndrome would put him at risk for infection. Meanwhile, Dr. Grange Coffin, who identified the syndrome, said the information just wasn't true. A doctor from CHOP later called Maverick’s mom and explained that it was not his genetic disability, but the “big picture” that made her son ineligible. Sadly, to so many people, the assumed “big picture” is that the lives of people with disabilities have no value in the long run, and decisions are made based on their perceived lack of potential. I am not a doctor, but I don't need a medical degree to know that all of us do have potential. Our lives only become lesser when we are choked with oppression and hatred by people who sum up our lives based on preconceived notions. Transplant candidates are chosen based on who is determined to benefit most in the future. The terrible truth is that those who are disabled are not treated as though they have a future. Children with and without disabilities should grow up feeling treasured and supported, knowing that those around them will view them as society’s greatest resource.
If society does not see children with disabilities’ value, it is not because it is not there. It is because no one has looked very hard. Our healthcare professionals, our children, and their families must be taught to expand their view of what is “normal” and learn the meaning of inclusive love. It is the job of doctors to make choices that help patients live a healthy life, not to make choices about who is worthy of that life. Finally, Maverick’s parents took him to Boston Children’s where he was accepted as a patient. He gained weight at last and made such improvements that he no longer needed a transplant. However, if he does someday, Boston Children’s will accept him.
This story has a happy ending. But it is fraught with warnings. Warnings about the danger of drawing conclusions about who should live and die. Warnings about the insidious and deadly consequences of ableism. Warnings that must be taken seriously, before it’s too late, and we’ve done something that violates others’ human dignity. Sweet Maverick, you are aptly named. You deserve life, and anyone who thinks you don’t qualify for a heart doesn’t have one. Grow strong, kind, and brave so that one day all who doubted you will feel the deep sorrow of their judgmental beliefs. And if anyone asks what the “big picture” is, tell that person this: the big picture is that you are loved, and just beginning to live a beautiful life.