Diane Shader Smith shares her daughter Mallory Smith’s story.

Diane Shader Smith shares her daughter Mallory Smith’s story.

Throughout her life, Mallory Smith followed a simple yet powerful mantra: Live happy.

At the age of 3, the California native was diagnosed with cystic fibrosis (CF), a genetic lung disease that deteriorates the lungs, digestive system and other organs. In addition to this, a rare and pervasive superbug infected her lungs at age 15. Up until her death at age 25, Mallory endured countless doctors’ appointments and hospitalizations, agonizing symptoms, round-the-clock intravenous (IV) antibiotic therapy and a double-lung transplant.

Her poignant story was the focus of Quality Rounds on April 11.

“When we talk about quality and safety, sometimes we define it very narrowly in terms of the quality of care we deliver in our hospital and how we create a safe environment for our patients,” said Brigham Health President Betsy Nabel, MD, president, who introduced the presentation. “More broadly, we can think about quality and safety in terms of our lives lived and how individuals with illnesses carry out their life.”

Mallory’s mother, Diane Shader Smith, who discussed their family’s experience during Quality Rounds, said her daughter lived life to the fullest despite her complex health challenges. A three-sport varsity athlete, free-spirited surfer and Stanford University Phi Beta Kappa graduate, Mallory was determined to “live happy” against all odds.

An avid writer, Mallory kept a digital journal for more than 10 years and asked her mother to edit and publish it posthumously to help patients with CF and their loved ones, and to spread awareness about the disease.

Advocating for the Patient

Quality Rounds was an opportunity for Shader Smith to reflect on the result of that work, the book Salt In My Soul: An Unfinished Life, whose title references the imbalance of salt in Mallory’s cells due to CF. Shader Smith also shed light on the challenges of caring for someone with CF, from always keeping vital enzymes next to the bedside to letting a patient sleep through routine tasks after a taxing night of IV treatments.

“Sometimes when you advocate, it puts you at odds with the system and makes you unpopular,” Shader Smith said. “Mallory’s tears came when the doctors and I were at conflict. I would say, ‘Let her sleep,’ or, ‘She doesn’t need to do this now.’ That upset her because she knew I had her back, but she loved her doctors and didn’t want to have any sense of conflict.”

Mallory became a well-known CF advocate in her community and a freelance writer and editor specializing in environmental issues, social justice and health care-related communications before her passing in 2017. She wrote: “My hope is that my writing will offer insight for people living with, or loving someone with, chronic disease.”

To watch Quality Rounds and learn more about Mallory’s story, click here.