The First Signs of CF: Olivia’s Newborn Journey
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cystic fibrosis,invisible disease
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The Hidden Battle of Cystic Fibrosis: Managing an Invisible Illness
February 19, 2023
One of the most challenging aspects of living with cystic fibrosis (CF) is that many of its symptoms remain unseen. To the outside world—including friends, family, classmates, and even strangers—Olivia may appear perfectly healthy. We often hear, “She doesn’t look sick…” But at just seven years old, Olivia is constantly fighting a battle inside her body—one that never truly stops.
The “Invisible” Symptoms of Cystic Fibrosis
Respiratory System: A Constant Fight Against Infection
While the respiratory complications of CF may be the most visible aspect of the disease, much of what happens remains hidden beneath the surface. Thick, sticky mucus builds up in the sinuses and lungs, leading to chronic congestion, persistent coughing, and an increased risk of life-threatening lung infections. People with CF are highly susceptible to harboring dangerous bacteria, making even minor illnesses a serious threat. Avoiding germs isn’t just a precaution—it’s a necessity.
Beyond avoiding sickness, Olivia and others with CF must be cautious in environments where water is stagnant. Harmful bacteria, like Pseudomonas aeruginosa, thrive in places such as lakes, hot tubs, and even soil. Since bacteria are invisible to the naked eye, vigilance in hand hygiene and environmental awareness is critical.
Digestive System: The Hidden Struggles
CF doesn’t just impact the lungs—it affects nearly every part of the body, including the digestive system. Olivia’s battle with CF began at birth when she was diagnosed with meconium ileus, a life-threatening intestinal blockage caused by thick mucus. About 1 in 5 babies with CF experience this complication, according to Seattle Children’s Hospital.
Even today, Olivia faces daily digestive challenges. Chronic constipation requires constant monitoring, daily Miralax, and, at times, full system flushes. Malabsorption makes it difficult to maintain a healthy weight, requiring high-calorie diets, enzyme supplements before every meal, and, for some, a gastrostomy tube (G-tube) for additional nutrition. Olivia was fortunate to wean off supplemental drinks by age three, but many individuals with CF rely on G-tubes to meet their nutritional needs.
The Emotional Toll: Mental Health & CF
Managing CF isn’t just physically demanding—it takes an emotional toll as well. Over the past few years, Olivia has developed anxiety and struggles with anger, a reality many CF families face. The rigorous medical routines, frequent doctor visits, and unpredictable nature of the disease create a heavy burden for even the youngest patients.
Procedural anxiety first became evident when Olivia turned four. Something as simple as getting her temperature taken could trigger intense fear. While we’ve worked to ease her discomfort, medical visits remain a challenge. Her anxiety has also spilled into everyday life, leading to separation anxiety and a need for control in situations where she feels powerless. When she feels overwhelmed, it can result in emotional outbursts or moments of defiance.
For a child whose life is dictated by a strict medical regimen, the need to grasp onto any semblance of control is completely understandable. And as her parents, watching her struggle with this invisible weight is heartbreaking.
The Hidden Reality of Daily CF Care
People often don’t realize just how much time and effort goes into managing CF each day. Olivia is currently on her “healthy” treatment plan, which includes:
1.5 hours of breathing treatments daily (vibrating vest + nebulized medicines)
Enzyme pills before every meal
Other daily medications with a total of at least 16 pills a day
When Olivia is sick, her treatment plan intensifies—quadrupling her breathing treatments to over three hours a day and sometimes adding antibiotics to her daily meds, making it difficult to fit anything else into our daily routine. Even as her parents, we sometimes forget how much time CF management consumes and how different life could be without it.
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Yearly Routine Clinic Visits
Why Awareness Matters
Caring for a child with a chronic illness is challenging, and when that illness is “invisible,” it brings a unique set of struggles. In some ways, we’re grateful that Olivia doesn’t outwardly appear sick—she gets to blend in, to feel “normal.” But at the same time, the lack of visible symptoms means people don’t always understand the severity of CF. And that can be dangerous.
We need a cure for EVERYONE living with this disease. Until then, we will continue fighting—because one day, CF will stand for Cure Found.