The writer is chairman of the Special Olympics.
Lily Parra is 4 months old and needs a heart. But she has been told she can’t have one.
Not because she’s too sick but because of deep-seated discrimination against those who have — or might have — a developmental disability. An operation that could give Lily a shot at life, and hope to her family, is being denied apparently not because of Lily’s medical condition but because of who she may become.
It’s a dangerous game to play — telling someone that her life is not worth living. For Lily, the story started during pregnancy. Her mother and father, Stephanie and Joshua Parra, were told that they should abort Lily because of defects that would mean certain death shortly after birth. Her diagnosis was hopeless.
But the decision wasn’t hard for Lily’s parents. Lily — however short her life might turn out to be — was already too precious to them. So Lily made it to the delivery room, and both parents got what they longed for: the chance to hold their baby and tell her that she was the most beautiful child in the world.
But she’s holding on, defying the expectations of everyone who thought her case was hopeless. Her mother is surely the source of an unseen strength: “I decided that I will give the rest of my life to Lily,” Stephanie Parra told me. “Whatever she needs I will do. That’s my decision, and I’m happy with it. I love her that much.”
But last month, a new threat emerged: Parra was told that her daughter would no longer qualify for the heart transplant she needs — that she was being taken off the list that could save her life. Through tears and disbelief, her mother asked why, what had happened, how could this be?
The answer was stunning: Lily, the doctors said, was at risk of having a developmental disability. There was a small amount of fluid on her brain that might lead to disability. They used a medically ambiguous term: “diffuse cerebral dysfunction.” That’s enough, they asserted, to end her hope of surviving. Parra said she was told: “We won’t give her a heart. But we can make her comfortable.”
The reasoning is coldhearted and abhorrent. It isn’t about Lily’s expected ability to survive as a transplant patient, but about what doctors have concluded about her ability to “function,” or not, based on their own deeply flawed, blinkered judgments about Lily’s “quality of life” and the worth and worthlessness of living with mental challenges. Their narrow thinking fails to see or comprehend the full range of human gifts — with potentially tragic results for families such as Lily’s.
“Comfortable” is not what Parra wants for her daughter. She wants what every mother and father wants for their child: life. The Parras fought back and demanded that Lily be returned to the list. The hospital didn’t budge, so Stephanie Parra reached out to the public for help through change.org.
More than 100,000 people have signed her petition. An outside expert who reviewed the medical records for us reached the same conclusion as the Parras: The diagnosis of a possible intellectual disability should play no role in determining whether Lily can survive a transplant. The hospital has suggested that other complicating factors played a role in the decision, but neither Stephanie Parra nor our experts can determine what they are.
Perhaps the doctors don’t know that intellectual disability does not mean a low quality of life. It’s just a challenge — and one I have seen overcome countless times. One doctor’s response to Parra’s efforts: “We don’t appreciate your pledge campaign.”
One commenter on the change.org petition was much worse: “Aborting the pregnancy would have been the best decision to make. A stronger woman would have done so. You have decided to give birth to a sick, deformed baby even though you were told this was what was going to happen, and now you think we should help you? Are YOU retarded?” In our bullying culture, no person is too young to be a target.
This is an infuriatingly familiar story, and people with intellectual disabilities know it well. Too many medical professionals see them only in terms of “function” or “dysfunction.” The vast diversity of gifts and challenges that make up each of us are reduced to a binary conclusion. You’re either able or disabled, valuable or not. And when you’re not, you’re hopeless. Developmental disability has been used to exclude a person from transplant consideration in past cases for this very reason.
That is wrong. And it may violate the Americans with Disabilities Act, too.
Lily is as precious as any child who ever lived — including yours and mine. She deserves a chance. If a heart becomes available, she should be on the list to receive it.