For teen with epilepsy, nurses are like a second family

epilepsy-emma-1When Emma Johnston steps onto 9 Northwest at Boston Children’s Hospital on a recent Friday afternoon, she’s like a celebrity surrounded by her fans. Nurses come out in droves with big hugs and warm smiles to greet the 13-year-old. They all know her. They have all cared for her, some since she was a baby.

Emma’s been a familiar face at Boston Children’s since her first seizure, at 7 weeks. Since that time, the nurses on 9 Northwest have made her feel special whenever she’s here.

Genetic mutation causes difficult seizures

Although Emma has gone for long periods of time without seizures, they have become more difficult to control in the past two and half years. Last November, after testing at the Boston Children’s Epilepsy Genetics Program, her family discovered why this might be the case: Emma has a very rare SCN8A gene mutation. Kids with this type of mutation have seizures that are notoriously hard to treat.

“It’s good to know what we’re dealing with and to connect with other parents who understand, but it’s still so new and the number of patients are so few that there’s still a lot to learn,” explains Emma’s mom Colleen.

Emma’s neurologist at Boston Children’s, Dr. Mark Libenson, has been working with this new information to try to help Emma gain better control of her seizures.

“Emma’s specific genetic diagnosis has helped us choose the best medicines for her type of epilepsy,” says Libenson.

But despite this new information, the past summer was especially difficult.

“All in all, she spent about a month at Boston Children’s between late May and August,” says Colleen. “She’s been intubated four times this year because of respiratory distress.”

Each time she’s in the hospital, the nurses are by Emma’s side to keep her as comfortable and happy as possible.

Giving much more than medicine

“The nurses all go way above and beyond,” says Colleen. “You expect that nurses will come in and give the correct medication. But it’s all the other stuff they do that makes them so special.”

Emma still uses the mantra that her night nurse, Nora Riley, taught her to relax before bedtime: “I am beautiful. I am capable. I am worthy.” Riley also taught Emma other relaxation techniques and gave her nighttime massages.

Emma with her “fans” on 9 Northwest

Another nurse, Kristen Gouin, has done interpretive dance with Emma. Julie Patel has taken Emma for walks, braided her hair and visited with her even when she wasn’t her assigned patient.

“Emma’s got such a great personality; she’s so vivacious and talkative,” says Patel. “I see her less as a patient and more like a friend, and I always try to make it like she’s not in the hospital. If she was in bed all day, I’d come in and say, ‘Let’s do something fun!’”

This kind of care makes all the difference to Emma and her family.

“We don’t live nearby, so it’s not like people can just pop in and visit when we’re here,” explains Colleen. “But the nurses are like special visitors for Emma. They come in and talk to Emma about whatever she wants to talk about — boys, Disney films, just regular girl talk.”

Colleen has also developed a close relationship with the nursing team.

“If I question something, they know it’s not because I’m questioning their ability; it’s because I’m her mom, and I know Emma,” Colleen explains. “They always encourage me to speak up and keep pushing for Emma’s needs. We work well together as a team.”

Just being a teenager

With the help of Libenson and the nursing staff, Emma is back home and back to regular teenage life — going to school, hanging out with friends and listening to music.

epilepsy-emma-3She recently attended her school’s semi-formal dance and was excited to learn she was drafted to the Fitchburg Falcons softball team as part of the Team Impact program, which matches kids with chronic conditions to college sports teams.

Learn more about Boston Children’s Epilepsy Center.