A Mother Speaks Out About the Impact of Long Haul COVID on Her Child

On a sunny August afternoon, I had the opportunity to connect with Sarah Lane and her daughter Bella through a virtual meeting. While Sarah was at her home in South Dakota, I found myself in my bedroom, seeking refuge from my lively children. Our discussion, which lasted almost an hour, was the result of numerous emails exchanged due to our busy schedules and the challenges presented by sick kids. Interestingly, both of us had children who had fallen ill recently—my son just before our initial call, and Sarah’s daughter Bella in October. Our conversation ultimately revolved around the topic of illness, as Bella is one of the many children grappling with long haul COVID, despite being only 11 years old.

Bella’s Journey

Bella’s journey began like many others. After being exposed to the virus at school, she became ill. While eight students were quarantined, and several showed symptoms, Sarah was informed that Bella’s COVID test came back negative. Doctors attributed her fever and abdominal pain to constipation. However, after two months of battling fatigue, nausea, headaches, and pain, Sarah insisted on a comprehensive medical evaluation. To their surprise, the tests revealed COVID antibodies, confirming that Bella had indeed contracted the virus at some point.

“For months, it felt like nobody believed us,” Sarah shared. “They were more concerned about her appendix, but that was ruled out. They kept saying it was constipation, but I knew that wasn’t the case because you don’t have a fever with constipation. Nobody was considering COVID. We went two months without answers, which was incredibly frustrating and scary for both of us.”

Once the antibody results were in, Sarah and Bella could finally seek the appropriate help. “After we got those results, we were able to start on the right path,” Sarah recounted. “Bella visited multiple specialists, and it was a rheumatologist who first suggested that she might be experiencing long-haul COVID.”

Seeking Treatment

In February, Sarah reached out to hospitals with specialized long-haul COVID centers. While Omaha Children’s Hospital was unavailable, the University of Minnesota Children’s Hospital scheduled an appointment for the following week. “The infectious disease doctor we saw was amazing,” Sarah recalled. “He started by saying, ‘Bella, I want you to know that we believe you.’ That meant the world to her. Previous visits had left her in tears because she felt unheard. Finally, we had someone who understood and took her seriously.”

After four months of seeking treatment, Bella was beginning to receive the care she needed for her various symptoms and chronic conditions. Long-haul COVID, which refers to the ongoing symptoms experienced after recovering from the initial infection, can include cough, pain, fatigue, shortness of breath, headaches, and cognitive issues. Ten months post-infection, Bella continues to struggle with pain, fatigue, and brain fog, and she often requires a wheelchair for mobility.

“She is always fatigued,” Sarah informed me. “Her pain levels are an eight out of ten. While she tries to manage her daily activities, there are limits to what she can do. The recovery from long-haul COVID isn’t straightforward; it has its ups and downs.”

The Heartbreaking Reality

Before her illness, Bella was a vibrant, active child who loved dancing, biking, and skiing. Witnessing her decline has been heartbreaking for Sarah. “It’s really tough to see her confined to the couch while her cognitive abilities deteriorate,” she expressed. “It’s a lot to handle.”

When asked what message she wanted to share about COVID, Sarah was emphatic. “It’s real,” she stated. “We need to take it seriously because we don’t know who will be affected. Bella should have been fine, but she isn’t. I wish people would trust the science and wear masks. It might help.”

Bella added her own poignant perspective: “It’s real. It’s not a joke. If I could do it over, I wouldn’t go back to school in fifth grade. So please get vaccinated, wear your masks, practice social distancing, and wash your hands. I deal with awful pain all the time. I don’t want anyone else to experience this.”

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In summary, Sarah Lane’s story showcases the profound impact long haul COVID has had on her daughter Bella, who continues to face significant health challenges. This experience highlights the importance of recognizing and addressing the ongoing effects of COVID-19, especially in children.