Meningitis in your words

Ben Whymark's story

Location: England
Categories: Pneumococcal
Age: Toddler 1-3
Relationship: Parent
Outcome: Recovery with after effects
After effects: Co-ordination problems

My beautiful bubbly, vibrant toddler at 16 months old in 2008 had a terrible bout of gastroenteritis for five days. He stopped being sick on the fifth day, but didn't fully recover.

Two days later he got a runny nose and was a bit grizzly. The next day he had a high temperature which reduced with paracetamol; by the third day he seemed a little more sleepy than usual but he was still running around.

The last time I spoke to him was at 3am on Monday 12th May; at 6am when we went to wake him I couldn't rouse him. I checked his eyes and they were rolling around.

He also had cold arms and legs but his body temperature was a bit warmer.

We called '999' and within 10 minutes we were off to the John Radcliffe Hospital. They suspected meningitis and started treating him straight away. He was too poorly for a lumbar puncture.

He experienced a series of localised fits which were very scary and within a few hours his left side - eyes, arms and leg - became less responsive.

In the morning of the third day they suspected his kidneys were failing and by mid afternoon they had arranged for the Children's Acute Ambulance Service team to take Ben to Great Ormond Street Hospital (GOSH) intensive care unit. They also confirmed he had pneumococcal meningitis, septicaemia, encephalitis and kidney failure (called HUS).

GOSH started kidney dialysis straight away and they didn't know at this stage the extent of the damage and how long we would be there.

He was in intensive care for a couple of weeks. He's been a fighter all the way through. He tried to come off the ventilator within a few days; he managed a few hours and then had to be re-intubated, but even that gave us so much hope for our little boy. He went to the renal ward when he was stable enough for another week or so, where he continued to have dialysis. He responded very quickly.

The support of the staff at the JR Hospital and GOSH was key in helping Lee and I through each day, along with Ben's doctor and health visitor, and our family and friends.

When Ben woke up he had lost a lot of weight and he couldn't talk, sit up, stand or walk, but as the weeks went by he gradually built his strength up and is now doing really well.

We went back to the JR Hospital for a week of rehabilitation which did Ben the world of good. But at this point Lee and I started to panic about the next steps; that's when Tina from the Foundation stepped in and gave us so much support and reassurance. Coming home was the biggest challenge - going from 24 hour care to an empty house was a horrible feeling, but it got easier as the weeks passed.

Ben has had weekly physio to help with his walking and rebuilding of his tummy muscles and left-sided weakness. He's also seen a speech therapist, had another MRI scan, eye test, seen a neuro-psychologist and a community paediatrician, but all in all the future is starting to look brighter.

"I feel deeply grateful that my wonderful baby has been given another chance."

A few weeks on and Ben is still having some bad days where he sleeps a lot of the day and holds his head and ear a lot. Some days he also falls down a lot which really upsets him, and large crowds of people and a lot of noise can bother him. He's going back to his childminder for a few hours a week and we will gradually increase over the next few months, but we're going to take it slowly.p>Now the acute phase is over, Lee and I are very quickly starting to crumble. The enormity of the whole thing is starting to hit us.

Now we've all got to rebuild our energy and start working towards the next phase.

I feel deeply grateful that my wonderful Christmas Day baby has been given another chance. We just now need to make sure we enjoy every second of it.

One year on

Just a year on (May 2009), Ben's making a fantastic recovery. Nothing is getting in his way, he's back to his childminders, only needs physio once a month or so and you'd hardly notice his left-sided weakness, apart from when he's tired when he still falls down a bit. The most stressful year of our lives but we're on the up and we're strong enough now to face any of the future challenges that we may have in store.

SONIA AND LEE WHYMARK
MAY 2009