E. coli meningitis
My Granddaughter, Millieanne, was born 9 week premature (31 weeks) in 2005, weighing in at 3lb 7.5 ozs. She was in the Special Care Baby Unit (SCBU) for 2 weeks then allowed home.
When she was 4 weeks old she came to stay for a week. It was most enjoyable having her stay with us although she was so small it was quite frightening.
On the day she took poorly she was very restless, she was crying a lot, she wasn’t taking her feeds properly, handling her made her more distressed, her body colour changed and she looked like a porcelain doll, but my main concern was she was limp and listless. We did check her for a rash but she was completely clear.
We phoned for the ambulance which came very quickly and she was taken off to hospital. As we lived roughly an hour away from hospital, the journey was frightening, cradling this listless little girl in my arms praying we would make it in time.
Within 5 minutes of getting there they did a lumbar puncture and it was confirmed that she had E coli meningitis and septicaemia. Our world fell apart, she was so poorly, she stopped breathing twice but the doctors worked their magic, and we were helpless standing watching.
Millieanne was treated in hospital for 3 weeks with intravenous antibiotics. After 3 weeks of turmoil no damage seemed to have been done and she was allowed home.
We were home less than half an hour and she became very unsettled again, screaming when touched, the light hurt her eyes and she wouldn’t take her feed. I paced the floor trying to settle her, I quickly phoned the ward and explained something was just not right and the symptoms were the same, I was frantic, so off we went again in an ambulance.
Further tests were done and again it was confirmed it was back, she had meningitis and septicaemia aged 8 weeks.
She took a turn for the worse and was transferred to SCBU through the night. We had a 6am phone call to get to the hospital as soon as possible and we really didn’t think she was going to make it. The hospital explained they would have to transfer her to another hospital PICU (Paediatric Intensive Care Unit) and it was just awful seeing her lying there with all the machines beeping and flashing.
She survived this awful disease but we were warned she might be left profoundly disabled.
After a week she was transferred onto a ward then back to her original hospital, where she stayed until she was 5 months old.
I have had full care of my Granddaughter since she was 9 months old, she is 9 years old now. Her quality of life astounds me, for all that she has been through over recent years.
She has Frontal Lobe Brain Damage. She can walk, talk and hear, but she has learning difficulties and behavioural difficulties. I was told if we had not responded as quickly as we did, the outcome would have been very different and she might have lost limbs. She does have autism traits but it’s not full blown and she has attended a special school for the past two years.
She is an absolute pleasure to be around; it’s not easy, one day to the next is never the same, but I would not swap her for the world.