Melissa and Bill Hood of Alpena, Michigan, welcomed triplets in March 2006.
Isabelle, Hanna and Jack. They arrived early, at 26 weeks.
“Jack was my trouble boy,” Melissa said. “He was on and off the ventilator throughout his whole stay there.”
After discharge in early July that year, Jack joined his sisters and parents at their home on the Lake Huron shore.
Like the turbulent waves outside their home, more troubles washed in.
“We noticed Jack wasn’t meeting milestones like the girls were,” Melissa said. “When he was a year old, he wasn’t sitting up. He wasn’t crawling. He wasn’t doing those large motor skills the girls were doing.”
The Hoods took Jack to doctors in Alpena and Traverse City.
They found no solid answers, no solutions.
“We tried some different medications but Jack’s liver enzymes started to elevate so we couldn’t use them anymore,” Melissa said. “Other ones didn’t make a difference at all.”
Jack grew but his motor skills did not.
Now a teenager, he suffers from dystonia, involuntary muscle spasms that cause twisting movements.
His arms and hands are stiff, rigidly bent in awkward angles. He can’t walk. His brain is unable to communicate to his limbs the desire to move.
Melissa and Bill explained Jack’s story to Dr. Moon
“He said Jack was a candidate for deep brain stimulation,” Melissa said.
The doctor performed the procedure in January. He inserted two probes into the top of Jack’s brain.
“There are leads, wires, that come from the probes that go into his chest to a generator, about the size of a pacemaker,” Melissa said. “It sends electrical signals to the brain.”
The family felt hope, perhaps for the first time in their now-teenage son’s medical journey.
They heard success stories about people who, unable to move, could once again walk and perform other activities after deep brain stimulation.
Jack isn’t there yet.
The family recently traveled from Alpena to Grand Rapids and spent the night in the Spectrum Health Renucci Hospitality House. The following morning they had a neurology appointment with Dr. Moon and M. Michael Bercu, MD, a Helen DeVos Children’s Hospital pediatric neurosurgeon.
Jack navigated his power chair, which he steers with his head, into the patient room.
While awaiting doctors, he showed off his memorization of the New York City subway station.
“G line to Church Avenue, every 15 minutes.”
Health Beat photographer Chris Clark told Jack that his son lives in New York City and takes the “J” train.
“What color is it?” Jack promptly asked.
“Purple, I think,” Clark said.
“It’s brown,” Jack corrected.
Brown it is.
“He’s got a mind like a steel trap,” Bill said. “He keeps up with news and sports scores.”
Jack proceeded to name car numbers for NASCAR drivers, past and present. He’s a huge Red Wings fan and longs to attend a game when COVID-19 subsides.
Jack, a freshman at Alpena High School, talked hockey. Dr. Moon entered the room.
“How are things since I last saw you?” the doctor asked.
Bill said Jack’s muscles and movements seem more rigid. He startles easily, too, even with common household noises.
Dr. Moon suggested the family try a week on, then a week off, to determine if the deep brain stimulator is a contributing factor.
“I can appreciate how this is frustrating,” Dr. Moon said. “I’ll adjust the stimulator. Maybe we’re not at the sweet spot yet.”
Dr. Bercu examined the leads on Jack’s head and said he’s pleased with the healing process after surgery.
“We’ll get through this,” he said. “It’s a process.”
Dr. Moon pulled up an app on a Samsung tablet and began to adjust settings on Jack’s deep brain stimulation device.
“With your left hand, can you touch your mask?” he asked Jack.
Jack struggled to lift his arm.
“Take a deep breath,” Melissa said. “Focus. You can do it.”
Dr. Moon asked Jack if he could open and close his hand.
“I can feel it in my hand,” Jack said of the stimulation.
“Bring it up and down,” Dr. Moon said.
“Dang it,” Jack said. “It’s tight.”
“Picture that you have a tortilla in your hand and you’re bringing it to your mouth to eat it,” Melissa said.
Dr. Moon explained that he can adjust the voltage, frequency and pulse width to the deep motor stimulators in the brain to help movement.
“You’re doing a great job, you’re trying,” Dr. Moon said.
He made another adjustment on the tablet, then asked Jack to bend his arm at the elbow.
“Your brain can’t overcome the abnormal muscle contraction,” Dr. Moon said.
The doctor explained how he had worked with another child in the past whose dystonia had essentially bent him into a pretzel.
‘A wonderful kid’
“Even if we get some improvement in his dystonia, it may not mean an improvement in function,” Dr. Moon said. “It’s more important to us that we strive to get an improvement in function and quality of life. We want more than just mild improvements.”
Dystonia is involuntary muscle contraction that comes from the deep part of the brain,” the doctor said.
“He’s trying to fight over involuntary muscle contractions,” Dr. Moon said. “His brain is trying to control the muscles but can’t because of abnormal communication in the deeper neurons.”
With all eyes on his elbow, Jack slowly bent his arm. Not a big move, but a celebratory one. Each inch is a milestone. Each movement a reason for hope.
Typically, deep brain stimulation is a process that can take several appointments to pinpoint optimal settings, according to Dr. Moon.
“While some patients get robust responses in a relatively short period of time, other patients may take over a year to see significant benefits,” Dr. Moon said.
He walked Bill through how to adjust the stimulator through a cell phone app and suggested a follow-up appointment in two months.
Dr. Moon said Jack was the first Helen DeVos Children’s Hospital patient to receive deep brain stimulation.
“Dystonia is a rare disorder,” Dr. Moon said. “Jack’s condition is likely genetic because he has normal brain imaging. So far, genetic testing has been unrevealing for the cause of Jack’s symptoms.”
Dr. Moon said he has high hopes for Jack’s future.
“Our knowledge increases exponentially year after year,” he said.
Melissa said they don’t want to offer Jack false hope about deep brain stimulation, but he’s optimistic by nature.
The family remains optimistic, too.
“He’s a wonderful kid with a great sense of humor and attitude,” Melissa said. “In gym class, all the kids were whining, complaining, ‘We’ve got to run.’ Here comes Jack in his power wheelchair and he says, ‘I’m ready to feel the burn.’ He’s just a wonderful kid.”