UK solves 6-year-old boy’s mysterious neurological condition
Dec. 9, 2017 started out as an ordinary day for Keisha Johns and her 6-year-old son Daniel “DJ” Johnson of Louisville.
She met DJ at the bus stop after school and drove him to meet up with his father Calvin, who would take him to Lexington for the weekend. Keisha had already returned to Louisville when she got a call from Calvin two hours later.
Had DJ ever had a seizure?, Calvin asked. Once, Keisha said, when DJ had a high fever. But this time was different. DJ said his leg was hurting, as was his head, neck and back. Then he collapsed.
When Calvin couldn’t keep DJ awake, he took him to the Makenna David Pediatric Emergency Center at the UK Albert B. Chandler Hospital. Keisha rushed from Louisville to meet them.
An MRI scan revealed DJ had hydrocephalus, or an excess of fluid around his brain. The source of hydrocephalus is usually within the brain, but aside from the excess of fluid, the MRI didn’t reveal anything abnormal.
Comprehensive care under one roof
After a number of other tests, Dr. Brandon Miller, a pediatric neurosurgeon at Kentucky Children’s Hospital, discovered DJ had a dural arteriovenous fistula, an abnormal connection between the arteries and the veins near the base of his spine.
The fistula had been leaking blood into the spinal fluid that went to DJ’s brain, which caused the hydrocephalus. Later, Miller noticed DJ couldn’t speak or move on his right side. Further tests showed a sudden constriction of the blood vessels around his brain, a condition known as a vasospasm.
Six-year-old DJ had had a stroke.
It was this confluence of conditions, the fistula combined with the vasospasm, that made DJ’s case unique. UK HealthCare proved to be the perfect place for a case as complex as DJ’s.
“I’m not aware of any cases like this,” Miller said. “One thing that makes UK different from other hospital systems is that we have both the adult and children’s hospital under one roof. In cases like DJ’s, where we need access to a certain specialty, everything is in the same building. So we were able to get the right tests and the right people involved right away.”
“He was a normal 6-year-old the day before,” Keisha said. “But while he was in the hospital, he was different. He wouldn’t smile, he wouldn’t laugh, he really didn’t want to be bothered.”
DJ was at KCH for more than a month, spending both Christmas and New Year’s in the hospital. Keisha credits the doctors, nurses and staff with helping DJ and his family cope with the uncertainty of his condition and celebrate his milestones.
“I called our primary care doctor the day after DJ was admitted, and she said DJ was in the best care that he could be in,” Keisha said. “The doctors and nurses were amazing. I never had to ask for anything. They kept us up with everything when we couldn’t be there.”
As a certified nursing assistant, Keisha was equipped with the knowledge and skills to help DJ when he was in the hospital.
“Being a nursing aid, I feel like was beneficial for the situation because there wasn’t really much I could do for DJ while he was sick,” she said. “So if all I could do was give him a bath and make him feel comfortable, then that made me happy.”
Back to normal
After being discharged from KCH on Jan. 10, DJ spent a month in a rehabilitation facility in Louisville to regain his strength. Now he’s back at school and planning his seventh birthday party. Aside from the occasional headache, DJ has no impairment.
Dr. Chris Spears, a resident on Dr. Miller’s team, met with DJ and his mother three months after DJ’s discharge.
“There’s no way that’s the same kid,” Spears said as he watched DJ run full speed inside the lobby of Chandler Hospital. “I thought it was his sibling. It’s great to see him running around and making a great recovery, more than we initially expected.”
“We know children recover faster than adults,” Miller said as he watched DJ run. “For patients as sick as he was, to have 80 or 90 percent recovery is spectacular. But I wouldn’t have expected this.”
DJ is back in school, running with his friends and wrestling with his brothers and cousins. He remembers his stay at KCH, how the doctors, nurses and Child Life staff made it fun. When asked what he wants to be when he grows up, he says he wants to be a doctor. Or a Power Ranger.
Meanwhile, Keisha is grateful to have the chance to celebrate DJ’s next milestone.
“It means everything to me to see him turn 7,” she said. “I don’t know what I would have done if I had lost him.”
Watch the video below to see Keisha, Dr. Miller and DJ discuss DJ’s case and find out how the 6-year-old is doing today.