My son, Jamie, was born perfectly healthy. We spent three days in the hospital before being discharged home. From the very first night, I noticed something wasn’t right. He was too quiet for a newborn - barely awake or crying. He slept much more than I expected. Deep down, I felt in my gut that something was wrong. I even feared he might end up suffering from sudden infant death syndrome (SIDS).
By the next day, Jamie was still hardly waking up. I kept thinking he looked pale and almost blue. I voiced my concerns to my family, but no one else seemed to notice it the way I did. At his follow-up appointment at the military base hospital, the doctors reassured me that he was perfectly healthy. But he was still awake for maybe 20 minutes the entire day, and I couldn’t shake the feeling that something was off.
The situation escalated quickly. While I was pumping upstairs, my mother and sister suddenly started freaking out. They had finally seen what I had been telling them—Jamie’s lips and face turning blue, with the discolouration lasting for an extended period. I rushed to get our Owlet monitor and placed it on him immediately. The alarm went off, unlike anything I’d heard before. His oxygen saturation was in the 70s and his heart rate had dropped into the 60s. We rushed him to the nearest children’s hospital.
At the hospital, they immediately ordered bloodwork. Based on the results, the doctor recommended a spinal tap. At first, the spinal tap appeared normal, but after some time growth appeared in the sample. It confirmed that Jamie had viral HSV-1 meningitis. He was admitted at only six days old. What we thought might be just an overnight observation turned into a week-long stay, and then we were told he needed to be transferred to the paediatric intensive care unit (PICU) and hospitalised for at least 21 more days, as per infectious disease guidance.
Jamie struggled to keep his body temperature up and required oxygen support. He began antiviral treatment immediately. In those first weeks, countless tests were run and doctors warned us they weren’t sure what his outcome would be. All we could do was stay by his side and pray.
During his hospitalisation, Jamie was diagnosed with a partial blood clot in his brain, a patent foramen ovale (PFO), and a Still’s heart murmur. He was started on Keppra due to seizure concerns and was also placed on a feeding tube. When his EEG came back clear, they discontinued the Keppra.
After about five days in the PICU, Jamie was transferred to the neurology floor. I knew the move was too soon. Once he was moved, the monitors’ alarms kept going off. They attempted to wean him off oxygen, but his saturations kept dipping. He then began to have seizures. When I voiced my concerns, the resident dismissed me. I continued to push for help and eventually Jamie was transferred back to the PICU due to instability.
We remained in the PICU for another four days. I personally witnessed him have a seizure and demanded another EEG. This time, the EEG captured seizure activity, confirming what I had been saying all along. Jamie was restarted on Keppra.
With time, he improved, and we were finally discharged home after a long 22 days. He continued seizure medication and eventually completed treatment for HSV-1 after six months.
Today, at 16 months old, Jamie still suffers from seizures and remains on Keppra. He also struggles with sensory issues, for which he receives occupational therapy, and developmental delays that continue to impact him.