For the Love of Jamie

Cheryl Moore expected a healthy baby to come off the plane from Korea. She got Jamie instead. And then she and her family made a surprising choice.

"It pretty much started to separate the family, because Jamie needed so much attention that we couldn't give that much attention to our children," Dennis recalls. He was feeling neglected by Cheryl, too.

And still, no one could figure out what was wrong with Jamie. In a home visit shortly after the adoption, Dillon's social worker mentioned that the baby was a "light sleeper." Jamie was rolling over and smiling -- hitting some developmental marks, albeit late -- but couldn't do other things at all, like hold up his head. Cheryl suspected something was really wrong, but no one could tell her what it was. She says she continued to ask Dillon to get every possible medical record Eastern had for Jamie.

Meanwhile, Jamie's head continued to grow more quickly than the rest of him. Someone told Cheryl that Asians have large heads (not true) and finally, in January -- four months after Jamie had come to live with the Moores -- a doctor friend at work looked at the baby and immediately suggested Cheryl get him a CT scan.

Vivian Spiegelman
Jamie was in and out of the hospital (top photo) during his first months in the U.S. Above, part of his mom's collection of hospital bracelets.
courtesy of Cheryl Moore
Jamie was in and out of the hospital (top photo) during his first months in the U.S. Above, part of his mom's collection of hospital bracelets.

That's the good-and-bad thing about working at a hospital, Cheryl muses. She got to sit in on all of Jamie's tests. During the CT scan, she recalls, "All of the sudden, the tech started to freak, [yelling] 'Get her out of here!'"

Eventually, she did look. Jamie's brain was squished to the size of a walnut, and there were gaps in what was there. Cheryl had heard of hydrocephalus, but not schizencephaly, a condition so rare the radiologist had never seen it.

Jamie was admitted to Phoenix Children's Hospital again, and a shunt was put into his head to drain the excess fluid smashing his brain.

By the time the CT scan was performed, Jamie's condition had progressed to the point where he had almost no mobility on his left side. Cheryl wonders how much more of Jamie's brain could have been saved if the diagnosis had been made earlier. The doctors tell her they'll never know.

And there's no telling if that diagnosis would have been made, even if the American doctors had had the benefit of knowing about Jamie's poor weight gain, fevers and hospitalization early on.

But one thing is certain: The Moores would not have adopted Jamie, they say, if they had had that information prior to his arrival in the U.S.

A month after Jamie's diagnosis -- in February 1997, six months after Jamie had come to America -- Dillon officials met with the Moores and handed them the boy's medical records, minus the ultrasound, from Eastern. There was talk about what would happen to Jamie. The Moores could still opt out of the adoption, in which case Jamie would become Dillon's responsibility.

There were tears shed on both sides at that meeting, and the Moores say they were told how lucky Jamie was to have made it to the States, that in Korea babies with his diagnosis didn't fare nearly as well.

Dennis remembers being told that in Korea, Jamie would have been put on a shelf, that no one would have loved him or held him. "They just leave them there and they die."

Cheryl wonders if she got Jamie so quickly -- and at just four months old -- because the Koreans were eager to get rid of him before anyone realized what was wrong. There is no medical proof, but she believes that the shaved spot on his head was not from the removal of a boil, but perhaps from a shunt used to remove fluid from his brain, since the hydrocephalus had been picked up at the time of the ultrasound, before Jamie's birth.

In any case, the Moores made a decision many wouldn't. They chose to keep Jamie.

Cheryl had bonded with the baby, after their constant time together. She didn't want to imagine his fate -- most likely foster care -- without her.

"I mean, can you look at this little boy's face and hold him and look at him and go through everything we've already gone through and then say, 'Here, somebody else.' How would I live with myself? How could I go through the rest of my life without wondering, what if something were to happen to him?"

Dennis agreed. You don't just give a child back, he says. "I told them, it's not like a used car."

The adoption was finalized in June 1997.

Jamie Moore has one of those crazy slow baby smiles that starts at the corners of his lips and spreads all over his face until everyone in the room is smiling, too. He sits in a high chair on a recent school day afternoon, as Karen Beason, his caregiver, aims applesauce toward his mouth.

In between spoonfuls, Courtney, another 5-year-old, scoots close to read Jamie a Barney book. "The kids at this age, they don't see any difference," says Beason, who takes care of several children with varying degrees of problems -- from Courtney, who has none, to Jamie, to kids with "tubes coming in and out of them."

Beason and her husband, Steve, love all the kids equally. They have a granddaughter with Down syndrome, and two years ago Karen quit her job as a preschool teacher to do this work out of her home; she's certified by the state. Jamie was her first client.

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