Meningitis in your words

Katy Mills's story

  • Location: England
  • Categories: Meningococcal
  • Age: Baby 0-1
  • Relationship: Parent
  • Outcome: Full recovery
Katy Mills

At 7am on Friday 18th October 1996, our 20-month-old daughter, Katy, was chasing her brother, Tom, around the kitchen, demanding breakfast and generally behaving as she did every morning.  Twelve hours later she was fighting for her life on the COSMIC ward at St Mary's Hospital, Paddington.   

In minutes Katy went from a lively toddler to being sleepy, crotchety and crying.  She became more and more drowsy and out of it.  At around midday she started to vomit and then had a febrile convulsion.  We whisked her immediately to our nearest A&E at Hammersmith Hospital.  Katy lay staring, uncomplaining but looking very miserable, as blood tests and checks were done all day.  At 5.30pm she had a lumbar puncture taken to test for meningitis.  We were told it looked clear.   It was moments later that I noticed a rash - small red pin-pricks on her neck.  And then a dark, bruise-like mark appeared on her chest in front of my eyes.

All hell broke out as the doctors and staff rushed around.  I couldn't believe that before my eyes the rash was spreading, appearing like large bruises across her small body.  I must have looked stunned because a doctor said to me: "you do realise your daughter is extremely ill?"  I couldn't even speak.  Katy had meningococcal septicaemia.  Everything happened so quickly from then on but it felt like I was watching it all in slow motion.  Katy was rushed to the operating theatre where she was put on a life support machine.  

At 8pm a retrieval team with a mobile intensive care kit from St Mary's swooped in to take over Katy's care.  They were calm, sensitive and reassuring as they began their fight for her life.  It took them four long hours to stabilise her in order to transfer her to St Mary's.  The thoughts flashed through my mind, "Is this right?  If she's so terribly ill should we be moving her?"  I voiced my fears to a doctor who said: "If she were my daughter I'd want her in the best possible place and that's St Mary's."   On the short journey to Paddington, we followed behind the slow-moving ambulance as it crawled along, carefully transporting Katy in her delicate condition.  We learnt afterwards that her blood pressure dipped dangerously during that short ride.

During Katy's first night on the COSMIC ward in Intensive Care the team tried different combinations of treatment.  All we could do was sit in the parents' room and wait.  It was the longest wait of our lives.   We were told to try and rest but we couldn't.   In the middle of the night my husband nodded off and then woke with a start, upset, "how could I sleep when Katy's in the next room dying"?  It was every parent's worst nightmare.  I spent that night with my eyes fixed on the small window in the parents' room door.   I thought I would be able to tell by the look on their faces as they came through the door whether the news was good or to prepare myself for the worst.

"There were times when Katy was "stable" but that wasn't what we wanted to hear."

Night passed into day, back into night and into day again.  We hardly noticed.  There were times when Katy was "stable" but that wasn't what we wanted to hear, we wanted the news that she was "improving" at the very least ... it was such a long, long wait.  Her poor small body was racked with this awful disease, causing a cascading effect as organs began to fail under the strain; her kidneys stopped working, her lungs were in danger of collapse, her heart raced as it tried to pump the poisoned blood around her small body. Her blood pressure was dangerously low and the blood supply to her hands and feet was poor - turning her fingers and toes darker and darker.  At one point she was connected to 20 different drug pumps and a special ventilator.   Every minute change in her body was continually monitored and analysed.  For the next 14 days a team of doctors and nurses used all their expertise to devise a cocktail of drugs to fight the disease.  Eventually after a two-week stay in intensive care Katy was miraculously was out of danger. 

Nearly 12 years on we still remember how lucky we were for Katy to have pulled through this frightening disease with little or no long-term effects.  It really was a miracle.

Our families and friends have become members of MRF over the years during which we have raised various sums of money for this worthwhile charity.  Indeed Katy herself has had many table top sales, sponsored walks and such like to raise money.   I became a MRF befriender and over the years have chatted to several people who have gone through similar experiences.  It does seem to help being able to share your experiences with someone who has a similar understanding.

MRF is still very much part of our lives.  I regularly advise or recommend friends, mothers, acquaintances to contact the MRF Helpline if they are worried about their child.  And I always hear that their advice and reassurance has been helpful to concerned parents.  MRF and St Mary's COSMIC ward are also closely connected funding further research into this pernicious disease.

Angela Elbourne
May 2009

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