Meningitis in your words

Joe Wilson's story

  • Location: England
  • Categories: Meningococcal
  • Age: Toddler 1-3
  • Relationship: Parent
  • Outcome: Recovery with after effects
  • After effects: Scarring - skin damage
Joe Wilson

In April 2002 My eldest child Robbie was 5 and the youngest Joe was coming up to his 3rd birthday. In the January Robbie had started full time school and Joe had gone to playgroup, meaning I could go back to work. After 5 years of being a full time mum that Easter holiday was our first ever proper school holiday, my husband was working but the boys and I had something to celebrate.

It was beautiful weather and we spend the whole holiday going on day trips. We went to an Arboretum, we took picnics to Newby Hall our local country house we took our scooters to the park and we visited friends. It was fabulous to watch the boys as fully-grown children, Joe shed nappies effortlessly and Robbie mastered roller blades. The final weekend we were going on SGI’s (Sokkai Gakkai International) first ever-family course, it had been 7 years since I had been on a course and I was really looking forward to it.

"As he came out of the bath he was shaking and obviously not just tired and emotional"

By the end of the second week I was looking forward to a day at home when a friend rang asking us to join her family on another picnicking day out. I thought we were too tired but it was her only day off and she sounded so disappointed I got myself into action and packaged us all off with another picnic. We had great fun with her children at a petting farm in the grounds of Temple Newsam and as we headed home in the late afternoon sun Joe fell into a deep sleep in the back of the car.

After tea that evening the boys were playing in the garden on a little plastic seesaw they’d long since grown out of, Joe went flying and banged his head. I checked him over, cheered him up and got them both in the bath. As he came out of the bath he was shaking and obviously not just tired and emotional. I quickly got him settled into bed and my husband and I had a little conference as to whether we thought this could be an indication that his bang on the head needed urgent attention. We decided as a first step to call NHS direct and describe his symptoms, by this time he was moaning in his sleep which was strange enough to hold the phone to him so the advisor could hear it. We decided it was most likely a virus but that I would take him to bed with me and wake him regularly to check for head injury symptoms. Within an hour he had a fever which made us both feel it was “just one of those childhood fevers,” this seemed a relief as it ruled out the head injury. We’d been through this a couple of times with Robbie and been turned away from A&E with a new bottle of Calpol (Children’s paracetamol) feeling like fussy new parents.

I particularly didn’t want to drive him into hospital, which was 35 minutes away as with two children, my husband would have to stay with Robbie, so I wouldn’t even be able to hold Joe. I hated the idea of strapping him into a car seat in a cold dark car when he was obviously exhausted

"I was met with the sight of a large spreading black rash all over his little legs"

Throughout the night I nursed Joe with Calpol and cold flannels. He wasn’t losing consciousness but by 3 or 4 in the morning I knew I’d have to get him down to the doctor first thing.

Andy crept in at 8.00 to say he’d take Robbie to work with him and as Joe seemed to have finally dropped off to sleep I decided to have a quick bath. I made a cup of tea and ran a bath and went to check him. He stirred and asked for a drink, I was delighted thinking this was a good sign, I got him some juice in a beaker and went to sit him up.

As I pulled the duvet back I was met with the sight of a large spreading black rash all over his little legs. I know I gasped and somehow carried on giving him his drink, I didn’t need to do the tumbler test, I’d read enough leaflets to know that this was meningitis and Joe had already been battling with it all night. At this point all I could feel was turmoil of fear and anger at myself for not spotting this earlier. I grabbed the phone next to the bed and my mind went blank, I couldn’t remember the emergency number.

After I’d called the ambulance and called Andy I explained to Joe what was going to happen, and quickly threw a few things into a bag.

We only have one ambulance in Pateley bridge but it was there in 5 minutes. As we drove to the hospital I was watching the rash develop on Joe’s face. I knew we were in a race against time, but both at that time and throughout the rest of days to follow I had an indestructible determination that we would make it on time and we would make it through this in one piece.

Joe was given the first of many massive doses of antibiotics and as we were being wheeled up to the ward I asked the doctor if he were confident the antibiotics would arrest the spread of the disease. He responded in a terrifyingly gentle manner that we’d need to “wait and see.”

As the nurses got to work hooking Joe up to drips and monitors I had a minute of quiet. I stood in the corridor of the children’s ward and for a moment thought to myself why me? Why Joe.

But even as I thought it, the determination came back. The nurse told me Joe must have been incubating this for days.

"I persuaded the doctors to wait a little longer and to cut a long story short, with a great deal of drugs, the leg recovered"

The first night Joe swelled up like a balloon while his kidneys struggled to overcome the vicious bacteria attacking him Every hour he had to have his blood pressure checked which was getting increasingly painful. He constantly lost the canula, which fed the drip into his vein, and I held him for interminable minutes while doctors tried unsuccessfully to insert a needle into a new vein.

The following day we were rushed to Leeds General infirmary to the children’s intensive care. By the third day, now covered with large blistering sores it was clear his life had been saved but his right leg, particularly affected was still completely swollen and in danger of not recovering. The doctors were considering completely sedating him and putting in a central line but this would have meant him being on a ventilator and led to a lot more drugs. I had had almost no sleep for 3 nights, and due to the way children’s wards are organised very little to eat, but my resolve was still surviving and I passionately felt Joe would get that leg going if he remained conscious, and that we would manage his discomfort together.

I persuaded the doctors to wait a little longer and to cut a long story short, with a great deal of drugs, the leg recovered. Over the next days Joe and I figured out a whole repertoire of ways of getting around the pain which by now was every time he moved. He needed to change position constantly and we found positions between us, ways of counting as we moved, and ways of planning how we were going to do it. I must stress how eternally grateful I was and am to the medical staff who saved him, but I felt like the expert, not medically but physically. I was amazed at my confidence in my own ability to respond to him. I hadn’t fared as well in the days when he was a sleepless infant. But in this moment I felt like the mother who lifted the 3-ton car, I would have done anything to bring him back home in one piece.

Finally it was 8 days in total when Andy came to drive us home from the hospital, it felt more like 100, Andy was physically and emotionally shattered from endless to-ing and fro-ing and the strain of being with us and being strong for Robbie. Robbie was very traumatised which we slowly unravelled in the days and weeks to come. Joe’s legs were a mass of gaping wounds, which again we slowly evolved systems to dress and manage, and he’s still very scarred. But he barely remembers those 8 days, his only memory is of the Thomas the tank engine food trolley that brought the chips.

Karen Wilson
January 2013