Twin sisters Amarie and Adalie Smith worked together to tackle Amarie's rehabilitation.
Celebrating the New Year and what the future holds has taken on new meaning for Tesfa and Brooke Smith.
The Smiths are treasuring family time with their twin daughters, Amarie and Adalie, since returning to their Big Rapids home Dec. 22, just in time to spend the holidays and welcome 2017.
“This year will be extra special in just thanking God that Amarie has been progressing so well and really taking time to just be together as a family,” Brooke said. “I think too often we take those little things for granted.”
The Smiths hadn’t been home together since Amarie was admitted Nov. 11 to Helen DeVos Children’s Hospital and diagnosed with influenza-induced encephalitis. The whole family had battled the flu, but while Tesfa, Brooke and Adalie got better, Amarie got worse. The energetic first-grader eventually became so disoriented, her frightened parents made a late-night drive to Grand Rapids and the DeVos emergency department.
After several tests, doctors diagnosed Amarie with encephalitis, an infection that causes swelling and inflammation in the brain. The serious condition can result in permanent brain damage and even death, said Dr. A.J. Rush, a pediatric physiatrist at Mary Free Bed Rehabilitation Hospital who began seeing Amarie while she was a patient at DeVos.
“When I first saw Amarie, she was in a vegetative state and storming,” said Rush, an expert and frequently invited lecturer on the phenomenon more often seen in patients with traumatic or anoxic brain injuries. “Patients who are storming can’t control their autonomic nervous system – their blood pressure and respiratory rate often spike, they may have spasms, are agitated, appear to be in pain, are very sweaty, burn a lot of calories very quickly and lose weight rather rapidly. It’s something we want to get under control as soon as possible.”
When Amarie was transferred to Mary Free Bed Nov. 23, her condition still hadn’t changed, Rush said. He took an aggressive approach with three medications simultaneously to control the severity and duration of her symptoms. Thankfully, it worked, but he remained concerned.
“I got her storming under control on a Friday,” he said. “When I came in Monday morning, I knew I was going to have to have one of two conversations with her parents – either the ‘Thank God, your kid’s woken up’ conversation or the ‘We need to have a surgeon put in a feeding tube’ conversation. I was very frightened it was going to be the latter. As a doctor, you hate that situation where you don’t know what discussion you’re going to have with a parent. You just don’t know until you get there …
“It was just wonderful to walk into her room that morning and see she was clearly waking up.”
In the weeks since, Amarie has slowly gained strength and shown cognitive improvements with daily physical, occupational, speech-language and recreational therapies. An MRI did not show any brain damage, Rush said.
“An MRI’s resolution isn’t perfect, so it’s possible she has some microscopic damage, but I think there’s reason to be optimistic,” he said. “It’s been especially fun the last couple of days when I had to look very carefully at Amarie and her sister to determine which one was which. When they move, I can tell Amarie from Adalie, because Amarie’s coordination is still a bit off. And Adalie has a small birthmark over her right eye. I thought it was pretty cool that I wasn’t quite sure who was who.
“Her recovery really has been amazing.”
Amarie will return to Mary Free Bed in a few weeks for neurological tests and will continue therapy two to three times a week as an outpatient.
“We feel very hopeful and blessed,” Brooke said.
She was with Amarie for the duration of her hospitalization, and Tesfa and Adalie made almost daily visits or overnight stays. Tesfa is a defensive line coach for Ferris State University’s football team, which earned a trip to the NCAA Division II semi-finals. While he traveled with the Bulldogs to Missouri for the Dec. 10 game, Brooke and the girls donned Ferris attire and watched the livestream on her computer in Amarie’s room.
“It’s been trying for our family,” she said. “We’ve struggled with balancing caring for the girls, but we’ve had a lot of support and prayers from family, friends and our community. We’re so thankful.”
The Smiths had not yet had their flu shots when they became ill. Getting the influenza vaccine is vital to reducing the risk of getting sick with seasonal flu and preventing potentially serious complications, Rush said.
“This would be far, far more common than it is if people didn’t get their flu shots,” Rush said.
Besides that, the take-home message in Amarie’s story?
“You don’t ever give up hope,” Rush said.
The Smiths didn’t. Tesfa and Brooke both said it was the promise of hope that gave them faith in Rush and the care Amarie would receive at Mary Free Bed.
“We will never complain about not having enough space after two little ones crawl into our bed at 1 a.m.,” Brooke said. “I’ll take having 20 little toes in my face any time.”
In this video, you’ll meet Amarie and Adalie, who participated in several therapy sessions with her sister. She’s also the one who inspired Amarie’s first word after she began to get better.
“Adalie came to visit and got up on Amarie’s bed,” Brooke said. “She leaned over and said, ‘Can you say Adalie?’ And in the littlest whisper, she said ‘Adalie.’ It was … wonderful.”