Meningitis in your words

Lucy Maddison's story

  • Location: England
  • Categories: Meningococcal
  • Age: Toddler 1-3
  • Relationship: Parent
  • Outcome: Recovery with after effects
  • After effects: Amputations
Lucy Maddison

In December 2004, three weeks after the arrival of our third child, our life changed. Our daughter Lucy, then aged two, contracted meningococcal septicaemia. 

The day had started as normal and once we had dropped our eldest son to school at lunchtime, Lucy had complained that she was cold. When we arrived home she had fallen asleep, so we thought best to let her sleep. 

She awoke a little grumpy and I remember her complaining that her armed ached but thinking that she must have slept on it. She managed to eat some lunch before going back to sleep. She was grumpy through the evening and didn't enjoy her bath that night, but we were still none the wiser. 

It wasn't until she woke late at night and had been sick requiring a change of clothes that we noticed her rash. Even then it wasn't real.  We called 999 and waited anxiously for an ambulance. Taken to our local hospital we then realised the severity of her illness and were told her chances were slim. 

Once stable, Lucy was transferred to St Mary's Hospital PICU in Paddington, the longest journey of my life. Again we were constantly reminded how ill our daughter was and to be prepared for the worst. Our lives became obsessed by the hospital machines and it was after about five days that we were told things were looking more positive. 

There was however a price to pay, the disease was killing Lucy's fingers and toes. They were slowly turning black from the disease and would not recover; the hope was that this wouldn't travel any further.

After 11 days it was decided that Lucy was ready to be taken off her ventilator and, if all went well, be transferred to a High Dependency Unit. Lucy was a true star, even with her lack of energy she was keen to see her brothers and get home.  It was heartbreaking to watch Lucy suffer and even when we made it back home to our local hospital it was still not the end of the road.  We made it home in time for Christmas, very grateful to be a family again.

"The first time she lost a digit was the worst experience of my life."

We were given a date for the removal of Lucy's fingers and toes but to wait for them to drop off, as it would be better that way and less of a loss for the body to reject them. Each knock to her fingers or toes was so painful for her and the first time she lost a digit was the worst experience of my life. Lucy has had a few operations to help with the scarring to her feet and fingers, but faces more as she grows up.

She is an inspiration to us as a family and has proved that she will give everything 110%. She is proud to be one of the only girls in her class who can climb to the top of the ropes in the hall. 

We have our challenges with Lucy: why can't she have toes so she can wear flip flops and when will her fingers grow back? It took me a long while to wear nail varnish in front of her and I would only cut her brothers' fingers and toenails when she wasn't around.  Now she is almost seven she wants to know more about her disease and can understand why she is so special.

Eve Maddison
April 2009

After effects
After effects

Detailed information about the after effects of meningitis