(CNN) — 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.
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.
But it didn’t matter. The doctors still refused to give Maverick a new heart.
“The real reason the hospital is refusing to list our son or consider him for a transplant is the hospital’s perception that Maverick will be mentally and/or physically delayed. It is clear that the hospitals (sic) decision to deny Maverick a transplant is based on nothing more than this illegal discrimination,” Maverick’s father concluded.
To read the whole story, the CNN link is http://www.cnn.com/2013/11/30/health/disabled-transplants/index.html.