Cystic fibrosis (CF) is a chronic condition for which there is currently no cure. Patients receive two CF genes which cause secretions such as mucus to be sticky and thick, resulting in damage to the lungs, digestive system and other organs. It is a difficult diagnosis, charting a long road ahead for patients and their parents. Early detection and improved treatments are extending lifespans for Canadians with CF, allowing them to enjoy more of life’s milestones. But not a day goes by that CF is not part of their reality. CF never takes a holiday.
A CF patient’s care team becomes a big part of their life, in some cases, a part of their family. Anne Smith is a Registered Nurse at CHEO who has been working with this special population of patients for 35 years. She is the longest-serving CF nurse in Canada. This wealth of experience gives Anne the ability to walk parents through what a CF diagnosis will mean for their child, their family and themselves. She can address questions before parents even know they have them, tailor information to the age of the patient and address the unique financial and emotional struggles that CF brings. For Anne, “The center of our team is always the family, and compassion goes a long way.”
Compassion motivates Anne to act as an advocate when coordinating medical care and when dealing with a patient’s network. Even a school with a well-intentioned focus on healthy eating needs redirection for CF patients who require high calorie meals with a lot of salt to balance their systems. Communicating clinical information is invaluable, but what shines through most is Anne’s sincere desire to help. Accurate and honest information is the duty of any health practitioner. Anne encourages a long term vision, telling parents, “Your son/daughter is going to camp, is going to get braces, will fall in love!” She demystifies CF by painting a picture. “It’s not all roses but we’re going to be there for you,” is the message she has for every patient.
“It’s not all roses but we’re going to be there for you,”
Anne is truly there for these families, helping them acquire unique parenting skills, handle guilt that can come when a child has a genetic condition, and work with teenagers who are not compliant. CF treatment becomes a part of growing up. Anne sees it as a transition the whole way along. She works with families to understand that they are parents but they don’t own the disease, the child does. That focus also drives how Anne empowers patients. She explains the reasoning behind therapy, always keeping patients as decision makers.
For her work with CF patients and families, Anne has been celebrated. She in turn credits the multidisciplinary team at CHEO for the exceptional care patients receive. Because CF is a complex condition, doctors and nurses need input from dieticians, psychologists and others. Anne says CHEO’s support of full spectrum care has created a clinic that prioritizes and supports a team approach. This team includes many veterans, which speaks volumes about the special bond between those who care for CF patients and the families they serve. As Anne says, “it’s a labour of love.” Far from being a helpless witness, Anne knows she can make a difference by facing “a situation you can’t change, but you can better, and by helping families to move on from that terrible day they hear ‘cystic fibrosis.’”