When Chloe went from being tired after school on Friday to weak and unresponsive with a high fever on Saturday, the Miller family knew something was wrong. “Even after we got her fever down, Chloe just wasn’t herself,” Mark said of his 12-year-old daughter, “And that was a red flag for us.” Chloe, who has autism and a seizure disorder, is non-verbal, and her parents play a critical role in translating her health needs and feelings.
After a quick stop at their local emergency room, the family was referred to Children’s National Health System due to Chloe’s low blood pressure and pale coloring. Upon arrival, their typically resilient pre-teen was having trouble breathing and was rushed to the ICU. “Chloe looked like she was sedated even though she wasn’t,” Mark said. “She didn’t respond to things that normally would have been frightening and painful, such as bright lights, multiple blood draws, and other procedures. That was very scary.”
That first night was a flurry of activity, with doctors and nurses providing regular updates to the family about Chloe’s symptoms, vital signs and treatment plans. Because Mark and his wife Amy were so closely involved in Chloe’s care, they were able to tell the team that Chloe had a bad experience in the past with intubation. The care team was alarmed by Chloe’s labored breathing, but with that information from her parents, they agreed to wait until absolutely necessary to intubate her. Chloe was able to successfully breathe on her own the entire time she was in the hospital.
About four days later, following treatment with antibiotics, oxygen support, and blood and platelet transfusions, Chloe started to recover and opened her eyes. The Millers knew she was feeling better when she started to resist the different medical tests and procedures, like her IV and BiPAP mask. They worked closely with the doctors to help explain Chloe’s reactions and how she was feeling.
“Children’s National prioritizes patient and family-centered care, and the doctors and nurses listened to us from the very beginning,” Mark said. “Since Chloe can’t tell us how she’s feeling, we have to be her voice, and her voice was heard throughout our time in the hospital.” The Millers participated in regular meetings with the care team, which were essential in her recovery. However, Mark recalls the team didn’t mention sepsis until later in her stay. “The word sepsis is scary, especially when you Google it,” he said. “But having a diagnosis when we got to the ICU might have helped us understand the bigger picture of what was happening.”
Chloe developed sepsis as a result of having influenza A, pneumonia and strep throat at the same time. Although this can happen to anybody, it’s more dangerous for individuals with complex medical conditions, like Chloe. That made the hospital’s vigilance, quick actions and commitment to involving her parents even more important. “Going through a situation like this is stressful for any parent,” Mark said. “Candid and regular communication with the doctors, nurses and staff is vital to both the child and family.”
Sepsis is a leading cause of death in
hospitalized children, killing almost 5,000
children annually in the U.S.
Sharing these sepsis patient stories is part of
the Improving Pediatric Sepsis Outcomes
collaborative, a multi-year quality
initiative to significantly reduce sepsis-related
mortality and morbidity across