Charli S.

Charli is the kind of child we all love – bright, athletic, funny, endlessly caring. At 12 years old, she was a swimmer, a soccer player, an honor-roll student, and she was just about to finish sixth grade.

On Monday night, she played soccer like she always did – playing hard, as goalie. By Tuesday morning, I saw her flushed, burning up, unstable on her feet. The thermometer blinked 105°F. I grabbed her, grabbed my keys, and drove to the local hospital because the pediatrician advised.

At the hospital, they gave her fluids and Tylenol. They drew blood cultures. They told me she had rhino and enterovirus. But she kept getting worse. Hour after hour, I watched her deteriorate while nothing changed. No escalation. No urgency. No answers. I kept looking at her face – pale, exhausted, breathing too fast – and something inside me screamed. This wasn’t normal.

This wasn’t okay. I requested her to be transferred to a children’s hospital. It was an hour away. But I knew staying was more dangerous than going. When we arrived, everything happened fast. They put her on BiPAP. They rushed her to a CT scan, crash cart in tow. Her temperature was still 105. Her respiratory rate was in the 60s. Her body was fighting for every breath. By the time she reached the ICU, she was in septic shock. And through all of it – through the fever, the fear, the chaos – Charli kept saying the same thing: “My chest hurts.” She pointed to her sternum every single time. She was trying tell us.

They took countless tests, specialists, and sleepless hours before they found it: osteomyelitis of the sternum – a rare, dangerous bone infection in one of the most critical places in the body. She spent 12 days in the hospital, most of them in the ICU. There were three days when we truly didn’t know if she would survive.

Her kidneys began to fail. Her lungs filled with infection and fluid. Every time one number improved, another crashed. I kept saying she was a moving target – impossible to stabilize, impossible to predict.

I remember sitting beside her bed, listening to machines breathe for her, watching her chest rise and fall under the BiPAP mask, praying she would stay with me. I remember holding her hand and feeling how small it suddenly seemed. I remember begging silently – please, please, please. But Charli fought. Her young, strong, athletic body fought. And the team at the hospital fought with her. We are blessed – profoundly blessed – to still have her here.

Advocacy is not a skill. It is a lifeline. You know your child better than anyone. You know when something is wrong. You know when care isn’t enough. Doctors later told me that my insistence on transferring her helped save her life. That my refusal to wait made the difference. That her strong, active body gave her the strength to survive.

But I believe this too:
A mother’s instinct is powerful. A mother’s voice is necessary. Remember!! You know your child’s baseline better than anyone. You know their energy, their personality, their pain tolerance, their normal behaviors. When something feels wrong, it is wrong. Medical teams are skilled, but they don’t know your child the way you do. If your gut says the situation is more serious than it appears, speak up. Repeat yourself. Say it again. Especially if you think they could have sepsis!

Source: Tiffany - mother