I remember the exact moment we realized Trikafta wasn’t the miracle drug we hoped it would be. Our 5-year-old daughter, Olivia, had become inconsolable and withdrawn, and was saying words that no parent should ever have to hear from their child. My husband Kevin and I froze, unable to process how quickly her joy had slipped away.

We wrestled with the pros and cons of keeping her on the medication. Just months earlier, she’d been facing back-to-back antibiotics, a potential hospital stay, and sinus surgery. Ultimately, we chose Olivia’s mental health over her physical improvement, which was an impossible choice no one should have to make.

We never thought we’d be in this position: getting on medicine that helped Olivia’s physical symptoms but also one that hurt her mind.

That decision didn’t happen in a vacuum. Mental health had been part of our story from the very beginning — starting in the NICU, before Olivia had even left the hospital.

Our CF Story Began with Trauma

Olivia’s story began with trauma. She arrived six weeks early after my water broke unexpectedly. At first, doctors reassured us she simply needed time to grow. Three days later, everything changed. Her stomach was distended, and she needed emergency surgery.

The following two months in the NICU brought multiple surgeries, an ileostomy bag, blood transfusions, intubations, and new words in our vocabulary: cystic fibrosis. We eventually left the hospital with a tiny baby, a rigid treatment schedule, and trauma that shaped how we approached every cough.

The first trauma wasn’t just Olivia’s, it was ours, too.

We learned early on that the NICU changes parents, too. Talking about that trauma with friends, support groups, and counselors helped lighten the weight, but even once we found a rhythm at home, the fear of what might come next was never far away.

When Care Itself Becomes a Mental Health Battle

By 18 months old, those fears were realized when Olivia cultured Pseudomonas. The infection meant two months of treatments with nebulizers, antibiotics, and her first vest, which seemed far too big for her tiny body. We eradicated the bacteria, but watching her strapped into machines was hard, and the "what ifs" were even harder.

As Olivia grew, anxiety began to show up in her behavior. At 4 years old, routine clinic visits that once caused no trouble suddenly became overwhelming. A simple temperature check or blood pressure cuff could send her spiraling into panic. Even necessary procedures like throat cultures often ended in tears, with one of us holding her close as she cried out in fear.

We learned that while treatments and tests are meant to heal and prevent, they can also leave invisible scars.

During the infection and procedural anxiety years, we started writing things down so they didn’t just live in our heads. For Olivia, we leaned on play-based activities, giving her choices, and working with her care team’s child life specialist to make clinic days a little less scary. Those methods helped us cope with clinic days, but nothing could prepare us for 2020, when the world outside our home suddenly felt just as threatening as the disease inside her body.

School, COVID, and Feeling Different

The arrival of COVID-19 magnified everything. Parenting a child with a lung disease during a global respiratory pandemic was like living in two pandemics at once. Isolation was heavy, and when Olivia started preschool, I struggled with handing over control. Would her teachers know when she needed to take enzymes? Would they understand the risks of germs?

Around this time, Olivia also began naming feelings that had once stayed hidden. She told us, “I hate being different.” She noticed her routines and treatments set her apart, and that awareness weighed heavily on her. Letting go, to teachers or to Olivia’s awareness that she isn’t like other kids, has been one of our hardest mental health challenges as parents.

She’s old enough now to say the words out loud, and we have to listen.

When Olivia started school, we coped by sharing simple “need-to-know” instructions with teachers, seeking support from her care team, and leveraging resources found on the CF Foundation’s website. And when she began saying she hated being different, we focused on listening instead of fixing, letting her know her feelings were valid. Just as we thought we were learning how to navigate these struggles, Trikafta forced us to confront the hardest letting go of all.

Choosing Mental Health Over a Medicine

When Olivia started taking Trikafta, it felt like everything collided — NICU trauma, years of treatments, fear of infections. For the first time, her mental health was visibly at risk. Stopping the drug came with guilt, relief, and fear all at once.

CF isn’t just about lungs and digestion; it’s about the battles in the mind.

In the end, we reminded ourselves that mental health is healthcare too. Choosing to stop Trikafta was terrifying, but it was the right choice for Olivia’s whole self. And it left us wary of every new medicine, even as we longed for better options.

Finding Hope in New Treatments

This year, Olivia began taking Alyftrek, and we are hopeful it won’t bring the same struggles that Trikafta did. So far, we haven’t seen the same mental health decline. Still, every new medication carries the same question in our minds: How will this affect not just her body, but her spirit?

That question still guides us. Each new chapter in CF care is a reminder that mental health isn’t separate from physical health; it’s woven into every decision we make.

Mental health must be part of the conversation — at the clinic, at school, and at home. For our family, caring for Olivia’s CF means caring for the whole child: her lungs, her body, and her mind. Mental health is not an afterthought; mental health is part of CF care.

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