Now they’ll do the transplant for sure, she told Maverick’s father excitedly. Our son doesn’t have to go home and die.
But it didn’t matter. The doctors still refused to give Maverick a new heart.
At first, Maverick’s mother was confused, but then she said it dawned on her: This supposed propensity for infections and tumors was a smokescreen.
She felt the real reason the doctors were denying their baby a life-saving transplant was that children with Maverick’s genetic condition grow up to have disabilities. They don’t want to give Maverick a heart because he won’t grow up to be “normal,” she thought.
At another meeting, she looked one of the doctors in the eye.
“You’re discriminating,” she said.
“That’s ridiculous,” she remembers the doctor responding.
“You don’t want to waste a heart on him,” Chenkus replied. “You’re trying to play God, and you’re lying to me.”
What happened next is the subject of a federal investigation and has pitted a family against the very doctors who were supposed to save their baby’s life.