Meningitis in your words

Leo Steel's story

  • Location: England
  • Categories: Bacterial meningitis
  • Age: Baby 0-1
  • Relationship: Parent
  • Outcome: Recovery with after effects
  • After effects: Hearing problems
Leo Steel

It was Friday 8th April 2005 and an ordinary day; Leo was waking slowly in his cot. I was going shopping with my mum for the first time in the seven months since Leo had been born.

Jon was looking after the boys for the day (also Louie, then aged two and a half).  Leo began to get a little grumpy and was breathing very heavily, making a snoring sort of noise.  He then began to whimper a little and, after checking his temperature, we gave him some Calpol.  

Breakfast was normal.  He ate his porridge, had his milk and seemed pretty OK.  Before I left, I looked at Leo and he had sleepy, drowsy eyes and I said to Jon at the time that I didn't think I should go.  But I went. And I still feel guilty.  I was 'phoning Jon throughout the day and he said that Leo was under the weather, very sleepy and he was going to keep him quiet and let him rest.  

As I was paying for my shopping I got a call from Jon to say that Leo was very ill.  He had changed his nappy at about 4pm and had noticed very dark, purple like spots around his groin area.  Jon had immediately run to get a tumbler and, on doing the test, realised that the spots were not disappearing and knew something was terribly wrong.  He bundled the boys into the car and raced to our GP surgery where they were beginning to close for the evening.  He was seen straight away and on seeing the rash the GP ran for some penicillin and shouted for the receptionist to call an ambulance.  The ambulance turned up almost immediately and in the ten minutes it took to get to East Surrey Hospital Leo was dead on arrival.  They resuscitated him, but the speed of the disease had been ferocious.  As I walked into the resuscitation room, the sight of Leo was almost too much to bear.  He was bloated, very distressed and covered in this bright purple rash from head to toe.  The paediatric team had managed to get a line into one of the main veins in his head but it had made such a mess.  We were taken to one side by the paediatric consultant and had the news that you never imagine you would have, that your child could possibly die.  The disease, he said, was unpredictable and fast.  

We had to stay one step ahead, predict its course, pre-empt its turns.  Leo was transferred at about 8pm to Guy's Hospital in London by a retrieval team of doctors and nurses that had come to fetch him.  At this point he was in a medically-induced coma.  

"It felt like the life I had woken up to in the morning was distant dream. "

Sitting in the parents' waiting room, as they had requested, it felt like the life I had woken up to in the morning was distant dream.  It all seemed so unfair.  Jon arrived 45 minutes later with my dad and we were numb with shock.  We could hardly talk and the feelings of not being able to do anything to help were overwhelming.  

That first night was bad, but nothing like the second.  We had him christened and were told that it was unlikely he would make it through the night.  But he made it through that.  And after that, day by day, and, with various downturns and setbacks, he made it through some more.  After two weeks in intensive care, Leo was well enough to be transferred to the children's ward.  In total, he was in hospital for three weeks.  We came home with a baby who had lost 50% of his body weight and was on a cocktail of drugs.  But he had survived, and for that we are forever grateful.  

We were put in touch with the Foundation by my sister, who thought it might be useful when we needed to talk to someone.  We have also been involved in raising money and awareness of meningitis and have valued their support very much.  Leo is now four years old and a strapping little boy about to start school in September 2009.  He had some hearing loss and still has a weak immune system but these are things we can deal with.  We know how lucky we have been and are thankful every day. 

Lucy Steele
May 2009

Meningococcal meningitis and septicaemia
Meningococcal meningitis and septicaemia
A major cause of meningitis