‘I was brave’
Rachel and Mike Nichols will never forget Valentine’s Day 2015.
As a blizzard raged outside that evening, they stayed warm and cozy indoors, watching a movie with their kids.
About 9 p.m., Mike noticed that Maci, then 4 years old, lay at an odd angle in her bean bag chair.
She probably fell asleep, Rachel thought. She stooped to pick up her daughter and quickly realized her little girl was not in dreamland.
“She was blue,” she said. “She was nonresponsive.”
They called 911. As they talked to the dispatcher, Maci slowly started to come around. Color returned to her face, but she moaned and seemed unaware of everything around her.
By the time the ambulance made it through the icy streets to the Nichols’ home, Maci had become alert enough to talk to her parents.
Unsure what happened―and worried it could happen again―the Nichols decided to take her to the emergency department at Spectrum Health Helen DeVos Children’s Hospital.
Initial tests turned up no signs of fever or problems with her blood sugar level. But as the staff ran tests, Maci suffered another spell.
The medical team began an electroencephalogram, known as an EEG, to measure electrical activity in her brain.
The next morning, a pediatric neurologist told the Nichols the test showed Maci had suffered seizures.
“We were shocked,” Rachel said. “There was no history (of seizures or epilepsy) in the family as far back as we knew.”
Maci began taking an epilepsy medication and, for a week, all was well. But the seizures soon came back.
Controlling the seizures
In the next three months, she suffered hundreds of seizures. She would sometimes have as many as 50 in a single day. They ranged from episodes that lasted just a few seconds to ones that caused her entire body to twitch and jerk.
She made multiple trips to the doctor’s office and at least six visits to the hospital.
“With the specific epilepsy type that she has, it can be very tough to bring it under control,” said Maci’s pediatric neurologist, Jason Umfleet, MD.
Maci is one of the brightest, goofiest, smiling-est kids I’ve ever seen in my life. She walks in and you can’t stop smiling.
Maci has epilepsy with myoclonic-absences. Seizures can involve a staring spell, fluttering eyelids or a series of quick jerks of the arms or legs.
Dr. Umfleet adjusted her medication and doses in search of the right combination to prevent seizures. Eventually, Maci began to take three medications three times a day.
“That’s what finally controlled them,” Rachel said. “Her last seizure was at the end of May, around Memorial Day (2015).”
Through the repeated tests and medications, spirited Maci made an impression on Dr. Umfleet.
“Maci is one of the brightest, goofiest, smiling-est kids I’ve ever seen in my life,” he said. “She walks in and you can’t stop smiling.”
Maci also formed a close bond with nurse practitioner Caroline Rich, PNP. She borrows her mom’s phone to send texts and make FaceTime calls to Rich.
But as much as she liked her medical team, taking medication every day and enduring the pokes from blood draws and intravenous lines wasn’t easy for Maci.
“In the beginning, it was scary for her,” Rachel said. “We talked about being brave and told her they were going to help her so she could go to school. They would give her medicine that would help her so she could be with her friends.
“Still to this day, she will say, ‘When I was in the hospital, I was brave.’ She has a lot of pride in that.”
Grateful to see their daughter doing better, the Nichols hoped she would someday be free of both seizures and medication.
“That was our No. 1 question: Will she outgrow this?” Rachel said.
“They said there’s always a chance she will, but we can’t guarantee it.”
After Maci went a year without seizures, Dr. Umfleet began to slowly reduce her medications.
She took her last dose in August 2017. And she remains seizure-free. With physical and occupational therapy, she has overcome the effects of seizures and medicine on her motor coordination.
Now in first grade at Kettle Lake Elementary School, Maci “is just a typical 6-year-old,” Rachel said. She loves school, plays softball, takes dance lessons, swims and plays with her friends.
And she is determined to keep up with her 8-year-old brother, Brody.
A moment in the spotlight
She celebrated her seizure-free, medication-free victory at a recent Grand Rapids Griffins hockey game.
Chosen to be a “Captain’s Kid,” she had the honor of dropping the ceremonial puck at the start of the game.
She stepped carefully onto the red carpet spread out on the ice at Van Andel Arena. With her were her mom and three special guests―Rich, Dr. Umfleet, and her brother, Brody.
Maci pulled a Griffins jersey over her head, its long sleeves flapping well past her hands. As the crowd cheered, she looked up, caught a glimpse of herself in the large arena monitor, and grinned.
Then, she dropped the puck neatly between the captains’ hockey sticks.
At home a couple of weeks later, Maci said she loves her Griffins jersey and can’t wait for a cold day when she could wear it to school.
The best part of the hockey game? “Going out on the ice,” she said.
For her parents, a seizure-free life is reason enough for celebration.
“It’s hard to put her to bed without giving her medicine because she took so many medicines for so long,” Rachel said.
Maci will continue to get checkups with her neurologist to look for signs of seizures as she grows and her brain develops.
“We think about that―in hopes that it never happens,” Rachel said. “We’ve made it this far.”