Ruling Out the Worst

Elias and his brother lie sleeping in a hospital bed together

For just under a week, Elias hadn’t been himself.

He was distressed in a way that felt relentless. Banging his head. Crying. Unable to settle. And because he’s non-verbal, we were left doing what we always do: Guessing. Interpreting. Watching every movement and behaviour, trying to piece together a story from clues no one prepares you to read.

I took him to the GP. Maybe it was an ear infection. A sore throat. Something small but painful that he just couldn’t tell us about.

The GP panicked and sent us straight to A&E. She felt she wasn't specialised enough to make a call for our complex child.

What followed was hours in a waiting room full of sick children, coughing and crying, while Elias spiralled and I tried to keep him (and myself) sane. Somewhere in that waiting room, I picked up one of the worst flus I’ve ever had.

When we were finally seen, the doctor checked Elias’s ears and throat. No infection. No obvious cause. It was put down to “behavioural” and we were sent on our way.

But Elias didn’t get better.

A week passed and he was still banging his head as hard as ever. Still distressed. Still not himself. Then he started vomiting, and that’s when the panic took over.

Elias has a history of raised intracranial pressure. Once you’ve lived through something like that, your mind never really resets. Vomiting stops being just vomiting. Distress carries weight. Everything feels loaded.

We went back to A&E on a Saturday morning, this time dragging his little brother along for the worst afternoon of his life for very different reasons. And we waited. Hours again. Watching Elias so uncomfortable, questioning the wait, asking when someone might see us.

At one point, someone tried to reassure us by saying, “You’re in the same boat as every family here.”

I froze. Because we’re not. And I wish, deeply, that we were.

Our child has complex additional needs. He has a medical history that fills two pages of A4. He has specialists, past diagnoses, and lived experiences that permanently shape how we read symptoms. Vomiting isn’t neutral for us. Head banging isn’t a phase or bad behaviour; it’s communication.

We don’t have the luxury of waiting things out. Of seeing how he is in the morning. Every delay forces us to mentally revisit worst-case scenarios we’ve already survived once.

Being told we’re the same as every other family might sound comforting, but in that moment it erased the reality we live with every day. It flattened our fear. It overlooked the extra vigilance that comes with parenting a child whose body has already proven it can fail him.

While we don’t want to be exceptional. We don’t want to be “the complex case.” We would give anything to be just another family in that waiting room. But we’re not. And sometimes that reality needs to be acknowledged.

Eventually, a consultant agreed this wasn’t straightforward. I made sure Elias’s history was clear. I was not leaving without answers, and I certainly wasn’t leaving without a CT scan. After sedation and imaging, the results came back reassuring. No raised intracranial pressure. No immediate danger.

Relief came, but it was tangled with confusion. If it wasn’t that, then what was causing so much pain?

Our local hospital doctor was on the phone to his neurosurgeon at GOSH, trying to problem-solve. We began preparing ourselves for a weekend admission, mentally rearranging everything again. Then the doctor wanted to check one more thing when we questioned if his cochlear implant had moved (again).

And there it was.

Tonsillitis.

She couldn’t believe it hadn’t been identified earlier (neither could I given one of the doctors had told me a week before there was nothing concerning, but let's not quibble these details now). We were sent home with antibiotics and a whole day wasted.

The answer was simple in the end. Painful, yes, but manageable. Contained. Not catastrophic.

But this is the reality for families like ours: Our minds always go to the worst first. They have to. We have to rule out the huge, terrifying possibilities before we can focus on the smaller, more ordinary explanations.

Because when your child can’t tell you where it hurts, or how much, or why, there is no room for assumption. Only vigilance. Only advocacy. Only pushing until you are heard.

We know we have a lifetime of Saturdays like this ahead of us. Of hospital visits that end in relief rather than resolution. Of being told “everything looks fine” while your instincts scream otherwise.

This was one Saturday we could very easily have done without.

But once again, we were reminded: for us, peace only comes after the worst has been ruled out.