Chairman of Special Olympics charges discrimination in hospital decision to take little girl off transplant waiting list

By Dave Andrusko

Lily Parra

Lily Parra

I wondered when, or if, the unnamed hospital would respond to Timothy P. Shriver ‘s angry op-ed posted Sunday in the Washington Post, “Put Lily back on the heart transplant list.” (The hospital turned out to be Loma Linda University Children’s Hospital, in Loma Linda, California.)

Shriver is the chairman of the Special Olympics and son of the late Sargent Shriver and the late Eunice Kennedy Shriver, the sister of John, Robert, and Ted Kennedy.

Shriver’s op-ed pulled no punches. Here is his lead:

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 was not entirely clear to me from the op-ed what Lily’s prenatal diagnosis actually was. Shriver writes that her parents, Stephanie and Joshua Parra, were told they should abort Lily “because of defects that would mean certain death shortly after birth. Her diagnosis was hopeless.”

Her parents were having none of that:

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 not only survived until birth, last Friday Lily turned 4 months old. Shriver tells us, “She has been in and out of intensive care and was recently intubated to help her lungs do their job. Infections are a constant risk. And her heart is weak – so weak she needs a transplant.”

However, “a new threat emerged.” Lily was taken off the transplant list, he wrote, because of reasoning that was “coldhearted and abhorrent”:

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.”

Shriver writes “The hospital has suggested that other complicating factors played a role in the decision,” adding, “but neither Stephanie Parra nor our experts can determine what they are.”

The family has posted a petition on and Shriver tells us that more than 100,000 people have signed, asking that Lily be placed back on the transplant list. (At the petition site, I learned that Mrs. Parra had been told that her unborn baby had a “serious heart defect.”)

Shriver sees the decision as rank discrimination. The decision

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.

Garrett Caldwell, the executive director for public affairs at Loma Linda University Children’s Hospital, responded in a letter to the editor.

Here is the operative sentence. “Loma Linda University Children’s Hospital has never declined a child for transplant based solely on the child’s cognitive status or developmental delay.” He then talks of two considerations in determining a patient’s “suitability for organ transportation”:

(1) They consult with outside experts at other transplant centers in California to “see whether a patient with a given set of conditions would be a suitable candidate in their institutions”;

(2)They “seek input from national experts regarding the appropriate allocation of organs for transplantation.”

Caldwell also flatly denies Shriver’s suggestion that the decision to take Lily off the transplant waiting list may be in violation of the Americans With Disabilities Act.

Not being privy to the internal discussion or knowing whether the hospital’s decision was what Caldwell said it was, no outsider can know whether “quality of life” concerns were a factor. But Shriver has no doubts.

He ends his fiery op-ed with this:

Too many medical professionals see them [people with intellectual disabilities] 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. …

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.