Longform

For the Love of Jamie

Spaghetti-Os slide down Jamie Moore's chin and onto his paper-towel bib as he strains away from mom and spoon to get a better look at the television. Jamie is a discerning -- if constant -- viewer, preferring Barney to the Teletubbies.

Like many parents, Cheryl Moore is sick of Barney, but unlike most kids, Jamie will probably never outgrow the high-pitched purple dinosaur.

At 5, Jamie is unable to talk or walk, can't feed himself and isn't potty-trained. He can't sit up on his own, so his mother props the boy in a miniature Winnie-the-Pooh-upholstered recliner. The recliner is covered with a plaid blanket, the original covering practically disintegrated from so much use. Jamie's as attached to mom as he is to Barney, and when Cheryl leaves the room he lets out a wail that gets increasingly louder until she returns. The doctors say he will never function intellectually much above the average 2-year-old.

Jamie's diagnosis is a severe, rare birth defect called schizencephaly, a condition where the brain does not grow correctly during the first trimester of pregnancy. In Jamie's case, the problem is bilateral, on both sides of the brain, and there is a large area where his brain did not grow at all -- the part of the organ that contributes to motor skills and IQ, among other things.

Worse still, Jamie was also diagnosed with hydrocephalus, or water on the brain, in which the body does not adequately absorb the fluid normally created in the skull. This put pressure on the parts of the brain that he did have, causing further complications.

"Cheryl, he can't make a brain," was how the radiologist explained it, Moore recalls, spooning tomato sauce off Jamie's face on a recent Sunday afternoon, a rare, relaxed day at home for the Moores.

They live in Wittman, a dusty spot on the map 50 miles west of Phoenix on Highway 60 toward Wickenburg, in a house you can't find without following Cheryl's red SUV along unmarked paths. Cheryl and her then-husband Dennis built the place themselves many years back, decorated the wood-paneled walls with John Wayne art and powered the place with solar.



That was long before Jamie was born, before they had a child who required frequent trips to the emergency room and daily treks to physical therapy, back when all they had were three healthy kids -- before Cheryl had to quit her job to take care of Jamie, before Dennis couldn't take the pressure of a sick child and left, before their son Jacob dropped out of high school and got into crystal meth and pot and booze and his sister Colleen looked like she wasn't far behind.

That was back when things were going so well for Cheryl and Dennis Moore that they decided to take the money she'd gotten in a car accident settlement and invest it in a child -- a foreign adoption.

James Patrick Moore's original name was Han Jin Ho. He was born in Korea in April 1996 and turned over to Eastern Child Welfare Services (now Eastern Social Welfare Services), a Korean adoption agency that finds babies for Dillon Southwest, an agency here in Arizona, which gave him to the Moores.

The Moores had requested a healthy child.



This is a cautionary tale for anyone considering adoption, particularly foreign adoption. Cheryl Moore is no neophyte. At the time she started adoption proceedings, she had two decades of experience in the medical field; she ran an accounting department at Phoenix Memorial Hospital. She made it clear that she was not looking to care for a special-needs child. She requested medical records.

But even this savvy woman did not realize that potentially crucial medical information about the child she would ultimately adopt could so easily be withheld.

Plenty of biological mothers are surprised -- either during prenatal testing or after birth -- to find that their children have severe disabilities. And there are people out there who knowingly adopt or offer foster care to profoundly disabled children.

But few find themselves in the situation Cheryl and Dennis Moore did in January 1997, when the baby they'd called their own for four months was diagnosed a permanent 2-year-old.

The adoption wasn't final. The Moores simply could have dropped Jamie at Dillon Southwest's doorstep.

But they didn't. Almost six years later, Jamie is a cheerful kid who loves his Woody doll from Toy Story and has to be propped up to watch TV.

Cheryl and Dennis are divorced. Dennis almost never sees the kids. Jacob's just back from rehab. Cheryl, who gave up the dream job she worked 20 years to get, found a more accommodating -- if less ambitious -- position and devotes herself to chauffeuring and caring for Jamie and fighting to get him the most advanced therapies and state-of-the-art equipment.

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Amy Silverman is a two-time winner of the Arizona Press Club’s Journalist of the Year award. Her work has appeared on the radio show This American Life and in the New York Times, the Washington Post, Lenny Letter, and Brain, Child. She’s the co-curator of the live reading series Bar Flies, and a commentator for KJZZ, the NPR affiliate in Phoenix. Silverman is the author of the book My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome (Woodbine House 2016). Follow her on Instagram (@amysilverman), Twitter (@amysilvermanaz), and at amy-silverman.com.