On a warm August day, I had the opportunity to connect with Laura and her daughter Emily through a virtual call. While Laura was at home in South Dakota, I found myself in my bedroom, trying to escape the delightful chaos of my little ones. Our conversation, which lasted almost an hour, was the result of numerous emails exchanged due to our busy lives and the challenges of managing sick children. My son had fallen ill just a week before our scheduled talk, while Laura’s daughter became unwell in October. Ironically, our discussion centered around illness—specifically, how Laura’s daughter Emily is one of the many children suffering from long-haul COVID, despite being only 11 years old.
Laura’s journey began like many others. Emily contracted the virus after being exposed at school, leading to eight children being quarantined. While several exhibited symptoms, Emily received a negative COVID test. Doctors suggested her fever and stomach pain were due to constipation. However, after enduring two months of extreme fatigue, nausea, headaches, and pain, Laura insisted on further testing. The results revealed a shocking truth: Emily had COVID antibodies, indicating she had contracted the virus at some point.
“For months, it felt like no one believed us,” Laura shared. “They were worried about her appendix, but ruled that out. Everyone kept attributing her symptoms to constipation, despite the fever. I knew that was incorrect, but no one was looking for COVID. It was incredibly frustrating and scary for both of us.”
With the antibody test results, Laura and Emily were finally able to seek appropriate care. “After we got the antibody results, we could finally move forward,” Laura explained. “Emily saw various specialists, including a rheumatologist who was the first to suggest it could be long-haul COVID.”
In February, Laura reached out to Omaha Children’s Hospital and the University of Minnesota Children’s Hospital, both of which have dedicated long-haul COVID centers. While Omaha wasn’t an option, Minnesota was able to schedule an appointment the following week. The infectious disease doctor there was compassionate and attentive, starting the visit with, “Emily, the first thing I want to tell you is we believe you.” This affirmation meant everything to Emily, who had left previous appointments feeling unheard and dismissed.
After four long months, Emily finally received the care she needed for her myriad of symptoms, which included chronic pain, fatigue, headaches, and cognitive difficulties. Long-haul COVID refers to the prolonged symptoms experienced after the initial recovery from the virus. While individuals with long-haul COVID are no longer contagious, they can suffer from symptoms such as cough, pain, fatigue, shortness of breath, and brain fog. For Emily, it has been ten months since her initial diagnosis, and she still grapples with pain and fatigue, often requiring a wheelchair for mobility.
“Emily is constantly fatigued,” Laura explained. “Her pain levels are an eight out of ten. Although she pushes through each day, her capacity for activities has drastically diminished. Recovery from long-haul COVID is not a straightforward process; there are good days and bad.”
Before contracting COVID, Emily was a healthy and active child, enjoying dance, bike rides, and skiing. Laura describes the difficulty of watching her daughter’s decline: “Seeing her confined to the couch and struggling cognitively is heartbreaking.”
When asked what message she wants to convey about COVID, Laura’s response was emphatic. “It’s real. This is a serious situation, and we must all take it seriously. You never know who will be affected. If you met Emily, you would think she should be fine. But she’s not. I wish people would trust the science, wear masks, and take precautions. It could make a difference.”
Emily echoed her mother’s sentiments, stating, “It’s real. It’s not a joke. If I could go back, I wouldn’t go to school in fifth grade. Please get vaccinated, wear your masks, and wash your hands. I experience awful pain all the time, and I don’t want others to suffer like I have.”
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Summary
Laura’s experience with her daughter Emily’s long-haul COVID journey highlights the challenges of recognition and treatment of post-viral symptoms in children. Despite Emily’s previous good health, she now faces significant daily struggles, emphasizing the reality and seriousness of COVID-19. Laura’s hope is for increased awareness and action to prevent similar experiences for others.
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