Spending the night in the hospital is not how many 11-year-old girls would want to spend their holiday break from school, but Mikalyn “Mika” Dado didn’t mind. With a well-loved blanket and a cuddly monkey named Georgie, she was planning to watch movies with her mom, enjoy popcorn and milkshakes, and post a few TikTok videos.
But it was not all fun and games.
Mika was in the EEG unit with monitors and cameras watching her through the night, looking for any abnormal brain activity as she eats, sleeps and walks around. After a difficult 2018, when she underwent multiple brain surgeries, this hospital stay was to make sure her brain activity looked fine and possibly get her off an anti-seizure medication.
“Everyone says 2020 is a terrible year, and it was pretty bad with COVID,” said her mother, Lisa. “But 2018 was the worst year ever for us.”
That year began fine for the Dado family, of Boardman, until Mika, the youngest of three sisters, had a terrible headache in July. Until then, she was a healthy, active 8-year-old girl, who played basketball and softball. Doctors assumed she was simply dehydrated and she started drinking more water.
Another terrible headache followed. This time, lab tests and a CT scan were ordered.
A CT scan showed cerebral fluid accumulating in her brain. This surprised Lisa and her husband, Michael, who assumed hydrocephalus was mostly a concern for newborns.
In her first surgery, Dr. Gwen Hughes, pediatric neurosurgeon, drilled a hole and re-routed the path of the fluid. After a 5-day hospitalization, Mika went home and all seemed fine for several months. But, by December, Mika’s headaches resumed. She was back in the operating room, this time to have a shunt placed. Unfortunately, a blood clot developed in her shunt and she was back in the operating room within a week. That shunt failed 22 hours later and she was headed back to surgery once again.
Another extremely scary scenario was blindness. For weeks, doctors thought Mika was going be completely blind. Then, she began to see colors accurately and her vision improved from there. Technically, today she lacks peripheral vision but seems to do fine, even when playing sports.
Another casualty of 2018 was Mika missing most of her third-grade year in school. She had to work hard with therapists to regain her short-term memory.
“For a long time, it seemed as if I was never coming to give them good news,” said Dr. Hughes. “Despite that, Mika’s family preserved. Her mom was her greatest advocate. I’m not sure without her absolute commitment to being here with Mika, and speaking on her behalf, that Mika would have had the same recovery.”
Lisa says it will always be a bit of mystery why this happened to Mika and when it did.
“The third ventricle drains into the fourth ventricle – this is how cerebral fluid drains – and we have no idea why this closed up,” said Lisa. “We may never know. It might be something that started at birth and took 8 years to happen or it could have been something that just developed over a few months.”
Dr. Hughes says she only sees about 1 or 2 cases a year like Mika’s, which is clinically known as delayed presentation idiopathic aqueductal stenosis.
“They are an amazing family,” she said. “They truly lived a nightmare, and Mika has far exceeded what I thought her recovery was going to be. A lot of things about her clinical course were really unusual, from the rapidity in which she became symptomatic when her shunt stopped working, to the way her brain architecture changed markedly with only slight changes in pressure, to the kind of seizures that she developed. After her third shunt surgery, she suffered a severe stroke.”
A shunt for life and a “J” shaped scar
Mika will have a shunt for life and has a scar on the top of her head as a memento of her year of brain surgeries.
“The cool thing about my scar is it is ‘J’ shaped,” said Mika. “We say it’s a sign that Jesus blessed me.”
Doctors and nurses have often complimented Mika as a “tough cookie,” as a way to acknowledge all she has been through.
But Mika found the phrase to be puzzling.
“She was at a phase when she was thinking about and analyzing everything,” said Lisa. “Then Dr. [Chinasa] Nwankwo [a pediatric epileptologist] gave her a card, saying, ‘You’re one tough cookie.’”
Mika, replied to her, ‘Why does everyone say I’m a tough cookie? No one likes tough cookies. They like fresh, warm, yummy cookies that come right out of the oven.”
As difficult as 2018 was, the Dado family likes to focus on those who made it bearable. They have given back to the Ronald McDonald House of Akron because they so appreciated the hospitality and the convenience of not having to drive the hour to and from their home during Mika’s hospitalization. They have made and donated polar fleece blankets as a way to give back and acknowledge a similar gift of an especially comfortable and beloved pink blanket given to her by a nurse named Philip. When it came time to honor a hero for a school project, Mika chose Dr. Hughes.
“She saved my life and truly is my hero,” she said, as she was settling into her hospital bed for her overnight study.
Her mom, nearby, was just glad 2021 was days away, moving 2018 further into the rearview mirror.
“Coming to the hospital definitely brought back some bad memories,” said Lisa. “Mika doesn’t remember a lot of it. We’ve come back for CT scans and check-ups, but this is the first time she is back for an admission. Thankfully, we’re on the better end of all of that now.”