Toby's Story
Our son was diagnosed with meningitis one day after he was born. This is what came after, not as a tragedy, but as a life rebuilt from the ground up.
I first wrote this post for the Meningitis Research Foundation’s “Meningitis in Your Words” campaign, Telling the truth about what meningitis does — and reading the truths others have lived — doesn’t just raise awareness. It helps people feel less alone.
Our son Toby was born in February 2016. I'd been through the nappies, sleepless nights, and baby milestones before. So knew what to expect. But nothing prepares you for hearing the word "meningitis" one day after your child is born.
Toby became unwell shortly after birth. Within hours, he was in intensive care and diagnosed with bacterial meningitis. At the same time, my wife developed sepsis following an emergency C-section and was rushed into surgery. In the space of an hour, I went from choosing baby bottles to watching two members of my family being stabilised by two separate teams.
It isn't easy to describe what that does to you. I remember sitting alone on a ward full of smiling, exhausted parents cradling their newborns, while my son fought for his life behind a curtain. The contrast was unbearable. No one said anything, but I could feel the looks — quiet sympathy mixed with the silent relief that it wasn't happening to them.
Toby spent weeks in care, and Sarah pulled through too. When we finally came home, we felt lucky just to be together. We knew he might have a difficult start, but we believed that with time, things would settle.
For a while, things seemed okay. Toby was a calm baby. Happy, cuddly, full of gentle smiles. But as the months passed, we noticed he wasn't meeting the developmental milestones you'd see with other children. He wasn't babbling. He wasn't crawling. And later, he wasn't speaking.
At first, we held onto the usual reassurances, "every child develops at their own pace," "boys are often slower," "Einstein didn't talk until he was four." But deep down, we knew.
The first formal diagnosis was global developmental delay. It explained a lot, but it didn't come with a roadmap. There was no timeline, no clear outcome. Just wait, watch, hope. Then, as we began adjusting to that reality, epilepsy entered the picture. Sudden seizures. More hospital visits. New fears layered on top of old ones.
There was no single turning point, no moment where someone told us exactly what life would look like. Instead, it was a slow accumulation of moments: forms to fill in, professionals using careful language, our growing realisation that this wasn't a short-term detour. This was the path.
Today, Toby is nine years old. He is non-verbal, lives with epilepsy, and has significant developmental needs. But those facts don't capture who he is.
