PFCC Star of the month: Donna Drury, Nutritionist, PICU and Cystic Fibrosis Clinic

February’s PFCC Star Lynn McCauley says Donna Drury is the definition of patient- and family-centered care. “If there’s anyone who’s patient centered, it’s Donna. Her dedication to families is ever-present, whether in the PICU or the Cystic Fibrosis clinic, and she is always thinking about how to do the best for them.” Lynn adds that she and her fellow nutritionists often consult with Donna for her expertise and advice. “She’s very deserving of this recognition.”

Patient- and family centered care takes on new meaning in the CF clinic where the team has ongoing contact with children until they’re 18. “They grow up with us,” says Donna. “I act as a nutrition coach trying to help kids achieve their full growth potential. There has been a multitude of literature in recent years about improved outcomes and quality of life for CF patients so it’s amazing to be part of a disease area where my work can help children live longer, healthier lives.”

Often when a child is diagnosed with CF, they have chronic malabsorption so Donna’s role involves administering pancreatic enzyme replacement therapy, ensuring they get adequate nutrients, and monitoring their micronutrient status for deficiencies. “It’s extremely rewarding when we’re able to start the therapies and watch the child thrive and see their malnutrition reverse,” she says.  

Family at the heart of it

Donna says it’s a privilege to work with this population. “The families have always been really generous with me,” she says, adding that they are the central core of their child’s care team. “Together we find solutions to whatever challenge is happening. My hope is to always provide an environment in which they feel supported and where they never feel judged when things aren’t going well.”

She acknowledges the “great multidisciplinary team” in the CF clinic for working with families to figure out what’s best for each child. The long-term relationships with these families also means watching their children transfer to adult care, which thanks to advances in therapy, is now the norm for CF patients. Andria is one of the recent “graduates” of the CF clinic. “It’s really so nice to see a child you’ve known their whole life become an adult, and master their own skills, and ask all the right questions,” says Donna. “It’s difficult to say ‘goodbye’ but we form bonds that don’t go away when they transfer.”

Andria’s mom Emilia feels that Donna played an important role in teaching Andria about CF as she got older. “When children are small they don’t understand the severity of their disease. Donna just knew when it was time for Andria to be more engaged, and she taught her more and more as time passed.”

“Donna has always been so informative about everything, and explained things in a way I can understand,” says Andria. “She’s shown me that what I do to look after myself, like eating a healthy diet and exercising, is really important for the disease.”

Emilia also appreciates Donna’s ability to treat them as partners in the process. “If she was concerned about something, she’d let us know so we could stay on top of it too. It really helped us feel that she was always there for us.”

Andria remembers one hospital visit when Donna wasn’t available to see them. “By the time we got home, she’d left a detailed phone message about my blood work, my weight and said everything was good. She basically summed up our visit in a voicemail, which was great.”

“Her passion for her work and the families she sees is so deep,” says Emilia. “We were so fortunate to have met her.”