“Li’l Man” Robert M.L. Davis Jr. loves to play outdoors like any other 4-year-old.
But he tires easily, and that puts a strain on his already-weakened heart.
The boy was born with pulmonary atresia, a congenital heart condition that prevents oxygen-rich blood from flowing into his one remaining lung. He has undergone a series of operations both in Atlanta and at Stanford University in California, but his grandmother and guardian Cathy Holland says their traveling days are behind them.
The last surgery, in September at Children’s Healthcare of Atlanta at Egleston, stopped the bleeding in his lung, she said, but doctors there said they couldn’t replace shunts that were bringing oxygen to the lung.
“He’s been through a lot, but his body can’t take all that stress anymore,” Holland said. “He still plays in the playroom we built on the back porch or outside in the yard, but he tires out very quickly and has to stop and take medication or oxygen.”
And that’s not all the family is facing, she added.
Robert’s grandfather, M.L. Holland, is in his fifth year of remission from non-small cell lung cancer, and he has heart problems.
“‘Hanging in there’ probably should be our family motto,” she said.
Dr. Sandra Kopacz, of Middle Georgia Pediatric Associates in Hawkinsville, said the future really depends on Robert, Holland said.
“He’s a fighter but unpredictable, and he’s already far outlived doctors’ expectations on how long he would live,” Holland said.
Complicating Robert’s condition is the gradual hardening of his liver and the weakening of his heart.
He had a “heart echo” (echocardiogram stress test) recently, she said, and it showed that the muscle is pumping, but it’s not pumping enough.
“There is a lack of oxygen, and whereas before his hands would get blue, now it’s his entire body,” she said. “I keep talking with his pediatricians in Atlanta a lot, but at this point they say there’s nothing more they can do.”
But you wouldn’t know that from seeing him, she said.
“He is a fighter, and I guess it’s all the love and prayers he gets,” she said. “How does he fight with what he’s got and still look so good? We just don’t know.”
At times the doctors have suggested calling in hospice, she said, but the boy always seems to fight back.
“Even though he’s getting weaker, sometimes I feel he’s doing better,” she said. “He’s come a long way, and he’s going to fight for that last breath. The doctors tell me they don’t know when that will be.”
For the moment, he plays in the mornings either outdoors on the back porch, rides his little Jeep and listens to music.
His favorite song right now is “Pocketful of Sunshine” by pop artist Natasha Bedingfield, “and he plays it on the computer so much,” she said. “Just the other night, on ‘American Idol,’ the song came on during a commercial and he kept saying, ‘My song! My song!’ He can listen to it all day long.”
She said the boy has many friends locally and in far-off places, such as Africa and Europe, through lilmanml, his Web site on CarePages.com.
“One of his friends who was in the same room with him at the hospital in California has passed away. She was a little 4-month-old girl,” she said. “He knows about it. He knows that when something happens, he’ll go to heaven and Jesus will take care of him.
“He’s got Jesus in his heart, and he knows it.”
To contact writer Jake Jacobs, call 923-6199, extension 305.