As people with cystic fibrosis live longer and healthier lives, an increasing number of them are considering or pursuing parenthood. Because little insight is available about the experience of parenting as a person with CF, my colleagues from the University of Pittsburgh and I conducted a photovoice study. Photovoice is a community-based research method developed to explore and share the experiences of overlooked or underrepresented populations by gathering participant-taken images and narratives.
We recruited participants from Community Voice in search of parents from across the country with a wide variety of experiences. Our selected 18 parents with CF met in groups via Zoom to discuss which topics related to parenthood and CF they wanted to explore. Between meetings, participants took photographs related to the chosen topic and then presented them to the group for discussion. Each group sorted photographs into key themes and wrote captions to accompany them.
Here we display a small selection of the photographs and their stories. These photos display the joys, frustrations, and strategies of parenting while also living with CF.
Parenting is largely about being able to multitask and be flexible. Those of us with CF are well versed in multitasking. CF demands daily treatments, and I used to wait until Micah napped in the afternoon to take my treatments. But as we know, we can't always wait that long. Often, mornings are the hardest time, and I need to take treatments sooner than later. I was often on single-parent duty as my husband travels a lot for work, and the only way that I could get my treatments done was if my son could do treatments with me. I gave him his own nebulizer to take his fake breathing treatment, with no medicine, and that made him feel like he was getting to do treatments too.
I have also learned that it’s important to normalize treatment time and make it fun for Micah. Being a parent, it can be easy to neglect my care to prioritize Micah, and I used to do that a lot. But I realized that I can’t be the best parent to Micah if I don’t take care of myself first.
My story is not just about CF, it is also about infertility. My husband and I struggled for a long time to have a family, and it seemed like it was never going to happen. Growing up with CF and being told that I wasn’t going to live to adulthood and be able to experience all that comes with it has made me even more grateful and appreciative of these moments.
It’s easy to get caught up in the day-to-day grind and sweat the small stuff. And life with CF brings daily challenges. I try to stay present, focus on the positive, and be grateful for what I have. Even in those moments when I’m struggling, I feel so grateful to have this little miracle boy, who makes every day so much better.
Everyone’s choice is different, but my experience has been that it’s been the greatest joy of my life to be a mom. My son is my biggest motivation to stay healthy and keep fighting. And I do not take a single second with him for granted.
This is my daughter a couple of days after she was born. She was delivered at 34 weeks and was in the NICU for three weeks after birth. My husband is cradling her with his hand (in the blue glove). Discussing the potential impact of CF on pregnancy could help parents with CF be more prepared for the possibilities, such as prematurity. Also, open conversation about the impact of pregnancy on CF (my lung function dropped 30% that I never recovered) can help prepare moms with CF by giving them the opportunity to plan for extra help or have people on ‘stand by’ if they get sick.
We are continuing to study when and how parenthood affects the health of people with CF, such as with the Health Outcomes of People with Cystic Fibrosis (HOPeCF) study, which examines the impact of parenthood on lung function. Our goal is to understand the intersection of parenthood and CF in order to design resources and trainings for CF care teams on how to best support people with CF as they decide if, when, and how to become a parent.
Interested in sharing your story? The CF Community Blog wants to hear from you.