Our family’s journey has been a rollercoaster of challenges and triumphs since we welcomed our goofy boy, Owen, into the world. Now 20 months old, Owen’s life has already been marked by medical hurdles we never anticipated when we first learned about his health conditions. We have lived in Accomack County on the Eastern Shore of Virginia since August 2017. Life in a rural community has been both a blessing and a struggle as we navigate raising our son with cystic fibrosis.
Our story truly began when I discovered I was pregnant in March 2022. Due to my high-risk status, influenced by my weight, I was referred to Eastern Virginia Medical School. During my second trimester, we learned that Owen had a clubbed foot, a ventricular septal defect, and a dysplastic kidney. To determine if these issues were due to bad luck or genetic factors, my husband, Zach, and I opted for a non-invasive cheek swab instead of invasive testing like amniocentesis. The results revealed that we are both carriers of cystic fibrosis. Although the doctors assured us there was a minimal chance Owen would have CF, we grappled with the shocking statistic of a 25% risk of having a child with the disease. Like many expectant parents, we clung to the hope that “this couldn’t happen to us.”
Owen’s birth was both joyous and anxiety-laden. Each moment felt like a precious gift wrapped in uncertainty. Born via C-section on Thanksgiving 2022 after rigorous labor, Owen began his journey in the NICU. His newborn screening indicated he was a carrier for CF, and our hopes surged. But the reality hit hard when, on January 4, 2023, we received the phone call confirming our fears: the sweat test Owen underwent less than 12 hours earlier resulted in a diagnosis of cystic fibrosis. From that moment onward, advocating for Owen's health became paramount as we learned that cystic fibrosis significantly impacts lung function and digestion.
Our first visit to the CF clinic at the Children’s Hospital of the King’s Daughters (CHKD) in Norfolk, Va. opened our eyes to the realities of this diagnosis. Owen would require daily breathing treatments, chest therapy, digestive enzymes, and a high-fat diet, among other needs. The earlier assurance that this disease wouldn’t impair Owen’s quality of life began to feel like a distant hope. We now understood how much care he would need — and how challenging it would be to manage it all in our rural community.
The Challenge of Access to Care
As teachers, Zach and I found ourselves balancing work and Owen's intense medical needs. Returning to work after my maternity leave proved to be impossible when I couldn’t find childcare equipped to meet Owen’s needs for constant monitoring and oversight of his treatments. Our application for the Commonwealth Coordinated Care Plus (CCC+) waiver was a silver lining, granting us Medicaid and WIC. However, finding reliable in-home care in our rural area posed immense challenges.
Despite my relentless efforts to connect with various care services, I struggled to find suitable help. Many caregivers felt unqualified to manage Owen’s complex needs. Consequently, since we could not find appropriate in-home care, the CCC+ waiver is now inactive, and we have lost both Medicaid and WIC. The struggles of living in such a rural area have cost us the very resources we fought so hard to obtain, leaving us feeling vulnerable and unsupported in a challenging situation.
During this difficult time, emotional support flooded in from family and friends, but the physical assistance we craved was harder to come by.
Finding Community Support
One of the things that truly lifted our spirits was the incredible support from our community. Our church, Holy Trinity Episcopal in Onancock, along with the members of Smith Chapel in Quinby, rallied around us with overwhelming generosity. They organized fundraisers to help cover Owen’s daycare expenses, which we eventually secured after reaching out to old coworkers who owned a daycare center. Although it wasn't the in-home care we had initially hoped for to help prevent Owen from getting sick, their kindness made a world of difference to us. A true social butterfly, Owen thrived around other kids, even amidst frequent illnesses.
While access to medical services on the Eastern Shore was limited, the compassion shown by our small-town residents was invaluable.
To raise CF awareness in our community, I’ve organized various fundraisers for Great Strides through the Cystic Fibrosis Foundation. The joy of community participation made events like truth or dare challenges, paint nights, and Super Bowl squares memorable. These efforts spread awareness about cystic fibrosis and fostered community engagement.
Social Isolation and Advocacy
Beyond logistical concerns, living in a rural area challenges our social lives. Social isolation has been a persistent issue. Many people in our community struggle to understand what cystic fibrosis entails and misinformation about CF leaves us feeling frustrated and overburdened. It was disheartening to encounter situations where we had to repeatedly explain Owen's condition, as some viewed it simply as a "lung disease," failing to grasp its complexity.
Our close friends and family live in Pennsylvania, compounding our feelings of isolation. Our local friendships primarily consist of fellow teachers who face similar time constraints that limit their ability to offer support. While they empathize with our situation, their busy schedules often leave little room for assistance. The geographical distance from our support system leaves us feeling alone as we navigate the emotional and practical challenges of raising a child with cystic fibrosis.
The Benefits and Moving Forward
Despite the challenges, we embrace the positive aspects of rural living — clean air, a safe environment, and the unwavering support of our community. Because we realize Owen needs more specialized care, we made the difficult decision to move to Newport News, Va. for easier access to CHKD. This move positions us better for any urgent care he might need in the future, especially after his hospitalizations in late 2023 and early 2024.
Advice for Other Families
To families navigating similar challenges, my advice is simple: be your child’s advocate, don’t shy away from seeking help, and never hesitate to reevaluate your living situation if it’s affecting your child’s health. Life with cystic fibrosis is a journey filled with ups and downs, but love and support from our community, family, and friends continue to illuminate our path forward. Owen continuously reminds us of the importance of resilience and love. While we know more challenges lie ahead, we remain hopeful for the future, cherishing every moment and lesson along the way.
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