Meningitis in your words

Claire Bohan's story

  • Location: Northern Ireland
  • Categories: Meningococcal
  • Age: Child 6-12
  • Relationship: Parent
  • Outcome: Recovery with after effects
  • After effects: Other
Claire Bohan

As our 12 year old daughter Claire left home for School on Thursday 21st December 2007 she mentioned that her ears were sore.

Claire was prone to ear infections. The first part of that particular school day was a visit to the historic site at Newgrange, Co. Meath, followed by her Christmas School concert in the afternoon. It was a day not to be missed.

At 1.30pm I got a call from her school, Claire was unwell. As I watched her walk the short distance from her classroom to the car park I noticed her movement was sluggish. As she sat into the car she burst into tears. She complained of feeling freezing cold. We made the short journey home, shortly afterwards she fell asleep. By 4pm Claire was hot, very hot. For a split second meningitis crossed my mind, but it left as quick as it entered. Claire did not appear to have any rash, not like the posters for meningitis in the doctor's surgery. I felt uneasy with her condition. A doctor's appointment was out of the question. They were already overbooked. The doctor's secretary reminded me that it was six days before Christmas, as if I didn't know. I wished her a happy Christmas anyway.

The doctor on call out of hours service was our next option but it did not open until 6pm. As we made the seven mile journey to doctor on call, the oncoming car lights bothered Claire's eyes. I knew something was wrong, as she had the same re-action to lights a couple of years earlier when she had glandular fever.

"It was while Claire was in isolation that I knew things were going downhill."

At the doctor's surgery Claire struggled to stay awake. It was now 6.30pm. The doctor did the usual examinations. He also got her to perform a few simple tasks, one of which was to remove her boots, but she was unable to do so, complaining that her head and neck were sore. Claire was admitted to our local hospital. Every twenty minutes she was checked over from head to toe. At 10pm she was again examined, but this time things were different, very different. A nurse drew my attention to a few, and I mean a few, freckle like marks on her body. As a precaution Claire was immediately put on meningitis antibiotic. It was explained to us that earlier blood test results would not be confirmed until the next day, but the next day could be too late...

It was while Claire was in isolation that I knew things were going downhill. No words were spoken between medical staff, their eyes did the talking. Minutes later Claire was in ICU. Throughout the night she deteriorated. By now I could see a mesh like rash on her shoulder and arms. She no longer comprehended what we were saying, she was incontinent.

We were taken aside, the paediatrician did her utmost to explain in non-medical terms Claire's deteriorating condition and the need for Claire to be transferred to Temple Street Children's Hospital, Dublin. I don't know how I managed to mumble the words, "Is Claire going to die, is Claire going to die", I cried. The paediatrician seemed to take forever to reply, finally she simply said, "I can't answer you''. We were both numb. My husband, Henry, a man of few words, was speechless.

We were asked to say our goodbyes to Claire, it was heart breaking. Claire our beautiful 5ft 4in daughter, taller than most of those caring for her, was fighting for her life. She had meningococcal meningitis with septicaemia. The sound of the ambulance siren fading into the distance in the December sunshine was chilling.

When we next saw Claire she was in a coma like state, her body attached to eight machines. She remained like this for five days and nights. Looking back at her time in ICU. I found the ventilator the most frightening piece of vital equipment. I can still hear the gurgling sounds as she attempted to breath and cough, but the vital apparatus taped to her mouth made this a frightening exercise to witness. The lines going into her body to prevent organ failure, the constant monitoring, the nursing staff that never left her room for her entire stay in ICU. The watching ... the waiting.

"Claire woke up on Christmas morning. We witnessed the true meaning of Christmas."

The most traumatic time for my husband Henry was signing medical forms giving approval for amputations should the medical team be faced with such a decision. Thankfully I knew nothing about such forms until we were all safely home from hospital. 

During Claire's time in hospital, neighbours, family and friends cared for our younger daughter Grace.

Claire woke up on Christmas morning. We witnessed the true meaning of Christmas. Our parish curate read a beautiful verse to Claire, I felt it was penned especially for her. For the first time in eight days Claire was free from all machines, the silence in her ward was eerie. It had been a very strange eight day journey, mixed with considerable emotion. Four days later we were on our way home. As we stood on the steps of Temple St Hospital, I shed a tear for the many children that never made it home as a consequence of meningitis. 

A neighbour gave me Meningitis Research Foundation's helpline phone number. I am ashamed to say I knew nothing about the organisation. The time ahead for Claire was tough, very tough. Her energy levels was non existent, her sleep pattern went crazy, there were many outbursts of tears. She cried and cried from lack of sleep, yet she was unable to fall asleep. These symptoms lasted for months. 

The helpline became our life-line giving us the vital reassurance needed about the disease. We never needed to check the clock or the calendar before making the call to the helpline, there was always someone to listen and advise.

It's now 13 months since Claire got meningitis, she is three inches taller and in three days time she will be fourteen years old. Claire started Secondary School in September. It was a big day for us all. She loves her new school and in particular participating in the basketball team.

We will never forget the care given by ICU staff in Temple Street. The was always an element of excitement between nurses as they finished three long days of 12hours shifts and headed home to their husbands, wives, babies, parents etc. For Nurse Tessa her journey home was made every two years, home was the Philippine Islands. During Clarie's time in hospital we were very much aware that there were other children in ICU, but we all understood to respect each other's privacy. 

It's hard to believe that something as simple as flu-like symptoms could have such devastating consequences in a matter of hours.

Thank you for giving me the opportunity to share our meningitis experience with you.

Doreen Bohan
March 2009