Charly Haley, Published May 28 2013
Fargo 9-year-old, single mom learn to live with child’s heart condition
That’s because he has a mechanical valve in his heart. After three surgeries, doctors expect the valve he has now to last until he’s about 18, said Damian’s mom, Shari Johnson.
As a single mother, Johnson, 28, has grown close with her mother and son as the three of them, all from Fargo, help each other cope with Damian’s heart condition.
“When he was born, the doctors said they needed to keep an eye on his heart because his valves weren’t formed right,” Johnson said.
When Damian was 1, he had his first surgery, which stretched his valves, in Virginia, where he lived with his parents. About four months later, after his parents separated and he and his mother lived in Texas, Damian had his aortic valve replaced with a donor valve.
Johnson had received a list of options covered by Tricare, the health care provided by Damian’s dad’s military work, and it looked like the best option was in Houston, so she and Damian moved there.
It was difficult for Johnson to find work in Texas, so she and Damian moved to Fargo to be close to her mother.
About two years ago, Damian had his third surgery in Minneapolis, when he had the mechanical valve put in.
“The reason they needed the new valve put in so quickly is because he outgrew (the other one),” Johnson said.
Damian said he doesn’t remember everything about his surgeries, but he did remember that he didn’t like being poked in the arms with an IV every day in Houston.
Damian, his mother and grandmother all said they get a little scared when Damian has to go in for surgeries.
“It can be terrifying,” Johnson said, “trying to be strong for him but still worrying about stuff from your end.”
It’s become easier, though, as the doctors get more familiar with Damian’s heart, Johnson said.
“They could draw a map of his heart with their eyes closed now, so I have a lot more confidence in it,” she said.
Damian was in the hospital for five days after his Minneapolis surgery, and then had to stay home from school for three months in Fargo while his ribs healed. Roosevelt Elementary sent a tutor to the family’s home until the end of the school year, Johnson said.
Damian did go to the last day of school to see his friends, though, and he was able to show off the scar on his chest.
Simple childhood experiences like playing sports or losing a tooth are complicated by Damian’s condition. Once he lost a tooth while sleeping and ended up in the hospital at the risk of losing too much blood, Johnson said.
The family deals with these difficulties together, though.
“Damian and I are really, really close,” Janelle Johnson said. “When Shari needs something or if I need something, we just all chip in and help each other out.”
He takes blood thinners and other supplements each day and has to make sure to stay active. Also, “the damage he’s doing to himself” as a preteen is something to watch out for, Johnson said. “I saw a bunch of bruises all over his body, and he told me exactly where they were from,” Johnson said.
Shari Johnson said she’s become good at being able to tell when Damian’s blood may be at risk just by looking at his face.
Damian’s experiences have made him very strong, and he’s learned to stay positive, his mom and grandmother said.
“It could always be worse, right?” Damien’s grandmother said to him.
“It could get worse – like a shark attack,” Damien said with a smile.
Readers can reach Forum reporter Charly Haley at (701) 235-7311