The mood in the room was somber as five doctors, a nurse, and a social worker pulled their chairs around the table and turned to address Autumn Chenkus and Charlie Higgs.
The couple’s 5-month-old son, Maverick, was down the hallway fighting for his life, and the doctors explained there was nothing they could do to help him.
“Take your baby home and love him for the time he has left,” Chenkus and Higgs say the doctors told them.
They asked how long their son had left to live. About six months, they remember the doctors telling them.
Higgs wept, but Chenkus felt like she’d cried enough in the past five months for a lifetime. She was like a rock now, and after the meeting with the doctors she went directly back to her son’s room without shedding a tear. In a chair next to his hospital crib, she opened her laptop and hoped the Internet might have clues for how to keep her baby alive.
Maverick was born with a severe heart defect, and even after two surgeries was in heart failure. Doctors had discussed a heart transplant with Maverick’s parents, but at the meeting they said he didn’t qualify for a new heart because he had a rare genetic defect that put him at a high risk for tumors and infections. A heart transplant would be too risky, they explained.
As Chenkus did her research on Maverick’s genetic condition, she couldn’t believe her eyes. Not one of the studies she read mentioned anything about an increased risk for tumors or infections. She e-mailed one study’s author, and he confirmed she was right.
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.