Fourteen-year-old Micah Hullum appeared to have made a full recovery 48 hours after testing positive for COVID-19. Three days later, he was lying in a hospital bed, unresponsive.
His mother, Keosha Street, suspected something was wrong when she found Micah standing in the living room, dazed and staring. He couldn’t remember why he was there. His “typical” COVID symptoms – cough, low-grade fever, dizziness – had all resolved on their own. But something still wasn’t right.
Keosha thought maybe he wasn’t getting enough sleep, or maybe his nutrition was off. But soon Micah was so fatigued and weak, he was struggling to even walk on his own. Keosha was supporting him to the bathroom and into bed. He didn’t want to eat. The brain fog had gotten worse, and he started hearing voices in the garage.
“One minute I had a perfectly health kid, and then it felt like all of a sudden, this chaos was happening,” she said. “Once these symptoms started happening, it went downhill quick.” She took him to the emergency room, where doctors said it was probably the beginning stages of schizophrenia.
Keosha, who worked as a mental health case manager before becoming a business process associate at Blue Cross and Blue Shield of North Carolina, knew that wasn’t it. Like Micha, Black Americans are more likely to be misdiagnosed with schizophrenia than White Americans. And it didn’t explain the other severe symptoms he was experiencing.
She decided to take him to Duke University Hospital for a second opinion. By the time they got there, Micah was nearly catatonic. He was admitted to the pediatric ward, attended to by a team of neurologists, psychiatrists and rheumatologists. When Micah first became unresponsive, it seemed like the whole hospital ran to his bedside.
“It was like a scene from one of those medical shows. There were twenty doctors in the room, and they said, ‘He’s unresponsive. We need to get a brain MRI,’” she said. “Everybody at Duke knows who my kid is. That’s the kind of case it was.”
The team of doctors diagnosed Micah with post-COVID encephalitis, or swelling on the brain. Encephalitis is a very rare complication in COVID-19 patients, and it’s especially rare in young people. Not much is known about the condition, which Keosha said made it more difficult to diagnose.
Viral encephalitis is a term that describes swelling of the brain because of a viral infection. It can happen after COVID-19 infection, but other viruses like measles and the Epstein-Barr virus can cause it, too. Encephalitis can cause neurological symptoms like weakness, lack of muscle coordination, personality changes, memory problems, and changes in hearing or speech. But case reports in the condition after SARS-CoV-2 infection are limited.
“When I went to Google, there was nobody like my kid. There was no point of reference. So I want to make sure his story gets out so that others can have that point of reference,” she said. “I can guarantee you there’s a lot of people who have been dismissed or misdiagnosed.”
By the time he was diagnosed, Micah was unable to speak, walk, or even sleep. He had no means of communicating, and he required a feeding tube for nutrition.
Keosha stayed by his side day and night, only leaving the hospital to shower or eat. Her Blue Cross NC team stepped up, donating leave time so she could continue to support her son through his grueling recovery.
“It was horrific. There are just no words to explain,” she said. “Just think of somebody you love, whether it’s a parent, a spouse, a child, and you’re just watching them be tortured. The only saving grace for me was that my faith was already strong. I knew he would be okay and that he would be healed. But to get there, that was not easy.”
The doctors started Micah on two steroids for the inflammation in his brain. Eventually, he started responding. He began talking and moving his legs, but the medications triggered psychosis. It was a balancing act, and Keosha said Micah would become easily overwhelmed by the activity and doctors, causing him to regress.
Once he started to practice standing, Micah hit a wall and became unresponsive again.
“We had to learn his limits,” Keosha said. “It was very scary. But I told the doctors from the very beginning, ‘You’re going to see a miracle in my son. I’m telling you. You’re going to see a miracle.’”
After a couple of weeks, Micah was able to start speech therapy to learn how to swallow again. He started physical and occupational therapy to learn how to walk and how to brush his teeth. Day by day, he made gains, re-learning basic skills.
On day 22, Micah had recovered enough to be released from the hospital. He left in a wheelchair, with strict instructions to avoid overstimulation and to continue his therapies.
Today, Micah continues to struggle with anxiety and fatigue, but Keosha says he has already surpassed the doctors’ expectations. While he’s not back to school yet, he is home schooling, he’s completed his speech therapy, and he no longer needs his wheelchair.
Keosha is amazed by her son, who she calls Miracle Micah. He’s returned to his usual self: observant, smart, a typical teenage boy.
“He’s thriving,” she said. “He literally is a miracle. Nobody knows if they have a tomorrow, and when you go through something like this, you just don’t look at life the same way anymore.”
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