CNN: Disabled baby denied heart transplant

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.

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Governor O’Malley Forms Commission for Effective Community Inclusion of Individuals with Intellectual and Development Disabilities

ANNAPOLIS, MD  – Governor Martin O’Malley today issued an Executive Order to improve training to help law enforcement personnel, paramedics, and other first responders better respond to situations involving individuals with intellectual and developmental disabilities (“IDD”). The Executive Order creates the Maryland Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities (the “Commission”). Governor O’Malley also announced that he would name Dr. Timothy P. Shriver, Chairman & CEO of Special Olympics, as Chairman of the Commission.

Governor O’Malley created the Commission in part as a response to the circumstances surrounding the death of Frederick County resident Ethan Saylor, who happened to have Down syndrome. Dr. Shriver, a Maryland resident, has been designated the Chairman of this commission based on his deep experience in working in communities to build understanding, acceptance and inclusion of people with IDD. Continue reading Governor O’Malley Forms Commission for Effective Community Inclusion of Individuals with Intellectual and Development Disabilities

Intellectual Disability and the Death Penalty


October 22, 2013
By THE EDITORIAL BOARD

Eleven years ago, the Supreme Court banned the execution of intellectually disabled people in Atkins v. Virginia. Ever since, some states have worked to circumvent that ruling by defining intellectual disability using unscientific standards or by making it nearly impossible to prove. On Monday, the justices indicated that they may at last be ready to clarify the Atkins decision by agreeing to consider whether a Florida law defines intellectual disability too narrowly.

Freddie Lee Hall was sentenced to death for the 1978 murder of a 21-year-old pregnant woman, Karol Hurst. The Florida trial court found that Mr. Hall had been “mentally retarded his entire life,” but capital punishment was not then prohibited in such cases.
Mr. Hall appealed his death sentence following the 2002 Atkins ruling, which held that people with intellectual disabilities are less culpable because of their “reduced capacity” for understanding, reasoning and impulse control. But the Florida Supreme Court ruled against him because he scored between 71 and 80 on recent I.Q. tests, and state law requires a score of 70 or lower for a finding of intellectual disability. Continue reading Intellectual Disability and the Death Penalty