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Cieran Burke

Meningococcal disease at 9 months

Meningococcal disease

I'm Sue, I'm 29 and Mum to Cieran, aged five. Cieran is a twin - he has a brother Connor - and a sister Caitlin who is now nine.

The twins were born healthy at 38 weeks - Cieran weighed in at 7lb 3oz, both boys were great.

When they were nine months old I went into the boys' room and Cieran was in his cot shivering with a high fever. I took his temperature and it was 40 degrees. I took Cieran to the doctors and asked could my son possibly have meningitis as at the age of 18 I had a friend that contracted meningococcal meningitis and I recognised the similarities. I was, for want of a better word, fobbed off with a bottle of Calpol. I spoke to two more doctors that day and was again basically told I was an over anxious mother i.e it was 9pm at night my nine-month-old would be drowsy etc.

I left Cieran to sleep off his "viral" (according to three doctors) infection all day Tuesday, but by the Wednesday I knew that my son was definitely getting no better. I rang the doctors and got an afternoon appointment. The doctor examined my child and told me she was 90% my child was OK. I disagreed with this as he didn't know who I was, winced in pain and couldn't keep his eyes open. The doctor rang the hospital and told them that my child was ok to go on a ward as he had nothing severe.

To try and cut the story shorter, Cieran was admitted to hospital and within the hour had had a lumbar puncture and was started on IV antibiotics. The next day he was diagnosed with meningococcal meningitis and a brain scan was done, which came back normal. Ten days into treatment Cieran had a two-hour seizure resulting in ventilation and transfer to PICU in Manchester; a brain scan after this showed abnormalities.

As a result of meningitis Cieran is profoundly deaf, he has a cochlear implant but it doesn't do much ie little speech, slight Cerebral Palsy, epilepsy and is currently undergoing assessment for adhd and autism. Four years on I am struggling - why does meningitis never go away?

SUE WARING

JUNE 2009