Three-year-old Hazel Norris always has someone by her side.
Most weekdays it’s Rachael Hatcher — affectionately called “Nurse Rachael” — who’s spent more than a year caring for Hazel.
Whether Hazel’s playing with toys or sitting in her highchair, Hatcher is never more than an arm’s length away. That’s for good reason: At any moment, Hazel could have a seizure.
In the middle of snacking on strawberries one recent afternoon in her Otsego, Minn., home, Hazel gazes up at Hatcher with a look in her eye. She reaches out with both arms like she’s asking for a hug, before starting to slump over — a sure sign that a seizure is coming on.
Hatcher moves into action. She holds Hazel, their faces inches apart as Hatcher softly counts the seconds: 1, 2, 3, 4 … so that Hazel can hear her voice ... 14, 15, 16, until the seizure is over.
Hazel has intractable epileptic spasms — frequent and uncontrolled seizures that can happen multiple times a day. She needs constant monitoring and, at times, intensive medical care.
Hatcher is one of four in-home nurses providing round-the-clock service. Their bonds, however, go beyond the job.
“I care and love for her like I do my own [children],” said Amy Oman, Hazel’s weekend nurse.
For Hazel’s family, the nurses have brought back a sense of normalcy to everyday life — something that wouldn’t have been possible even a short time ago.
The ‘dark time’
A few weeks after Hazel was born in 2016, her mom, Gina Norris, started noticing that she was blinking a lot. Doctors said it wasn’t a big deal.
But then, on Mother’s Day, Hazel started having multiple seizures. “They just keep coming. Just one after another,” Norris remembered.
Hazel was diagnosed with a genetic epilepsy disorder unknowingly passed down from her father, Charlie. Though Charlie manages his epilepsy with medicine, doctors have not yet been able to control Hazel’s seizures. Complicating matters, Hazel also has a developmental delay and a G-Tube connected to her stomach to deliver medicine and nutrients.
With Hazel in need of 24/7 monitoring, Gina and Charlie took turns staying awake in case Hazel had a seizure in her sleep.
“It was overwhelming,” Gina said, calling the period a “horrible, dark time.”
When they came home from the hospital, Hazel’s severe seizures would often send her back, sometimes for weeks on end. Even at home, the family lived in constant fear for Hazel’s safety. She typically has around 50 seizures a week.
“I didn’t feel capable or confident in the things at home,” Gina said. “Like, omigod, what if she has a seizure and stops breathing? I remember I was so scared I did not want to leave the hospital.”
Gina went on leave from work and Charlie took more time off. But even with the help of relatives, the situation quickly took its toll on Gina’s mental health and the couple’s marriage.
Hazel’s condition was too much for the family to handle on their own.
Assembling the team
Help arrived when Hazel was 8 months old.
After an extended stay in the hospital, doctors recommended in-home nursing to get Hazel back home.
The care is expensive — it adds up to thousands of dollars a month — but Gina said the family is fortunate to have good private insurance that covers a bulk of the cost. Hazel also qualifies for state Medical Assistance, which helps cover her medication, therapy and extra care.
“We are lucky,” Gina said. “I just wish it was the same way for everybody.”
The nurses give Hazel’s medications three times a day, watch her oxygen levels and monitor her heart rate during seizures. If necessary, they perform lifesaving medical interventions, such as administering oxygen.
Pam Lambert, Hazel’s Friday nurse, said it’s a holistic approach to health care. “You’re not just giving health care, but you’re developing the relationships,” she said. “You’re able to make a bigger difference because you get to know each person’s little habits and you get to know when something is not right with them.”
Hazel’s family says she’s made significant strides when it comes to speech and physical therapy. She recently started to walk up and down the stairs on her own.
Yet, despite the benefits, demand for in-home care is outpacing the nurses who supply it. The state has more than 4,000 vacant jobs for registered and licensed practical nurses, according to the Minnesota Department of Employment and Economic Development. That has experts worried that families who need home health care might not receive it.
“The real impact is that clients aren’t going to have access to care in their homes because there just aren’t enough people to take care of them,” said Kathy Messerli, executive director of the Minnesota HomeCare Association. “There isn’t someone to show up and take that shift.”
Without in-home nursing, Hazel would likely make many more trips to the hospital. Now, she can play in the backyard, practice physical therapy in the basement and be near her older sister.
“It does so much for her growth and development to be at home,” Gina said. “When she’s home she’s just completely a different kid.”
The honor of care
The nurses have been there for the important moments in Hazel’s life — her first steps, her first day of preschool.
Mary Moore has worked with Hazel for more than two years, the longest of all the team. She was there when Hazel said her first word, “Mama.” The family says that Hazel started saying “Mary” shortly after.
“I’ve worked in a lot of different settings and you don’t hold an 80-year-old man or a 50-year-old woman that you’re caring for, but when it’s a child, those types of boundaries go out the door,” said Moore. “It gives me what I need to feel fulfilled as a nurse.”
She recently switched from day to overnight shifts, marking the first time Gina or Charlie didn’t have to stay up with Hazel every night.
“We get to choose who to honor with our service,” Moore said. “And this is a privilege for me.”
With the nurses around, Gina’s gone back to working part-time. She and Charlie took their first vacation in almost three years. “We get sleep again,” she said.
And for Hazel, the nurses have become like a second family.
“They love her,” Gina said. “I know they love her and she loves them just as much.”
Austen Macalus is a University of Minnesota student on assignment for the Star Tribune.