Cooper’s story, at 5 weeks old

Cooper was only five weeks old when my husband and I awoke at 7am to find he had slept through the night. As he was a 'premmie' and still only weighed about 2.5kg he normally fed every four hours. I was instantly worried!

I found him lying very still with his eyes half open and very pale. I tried to wake him by changing his nappy but he was limp and just groaned. At the time my partner and I were sick with the Flu, so we assumed that was the problem with Cooper. We took Cooper to the local hospital and were seen instantly. They administered about five kinds of antibiotics to cover a possible infection. At that point I just knew!!!

A team from the city children's hospital came to collect Cooper and took him to their neonatal intensive care. When he arrived tests were completed and they confirmed meningococcal meningitis (later to be confirmed as type B). I was devastated, the paediatrician sat with me as I cried and cried and tried to answer my questions. We were told, although unlikely, that Cooper might die, but more likely that he might suffer brain damage, hearing or sight loss. Over the next four days, Cooper screamed and startled continuously, probably at what he perceived to be highly magnified light and sound. He lost a lot of weight and the first brain scan showed signs of swelling. He had three weeks of supportive intensive care and intravenous antibiotics and finally we were allowed to go home as the brain scans had improved.

Cooper had regular hearing tests, which continue and they have been clear so far. Cooper had some nystagmus (eye condition which results in jerky rapid eye movements) caused by damage from the meningitis. However over the past year his eyes have virtually stopped any shaking that was originally present. He has had another clear scan, but we were told that the brain can take up to two years to finish scarring, so we will have to wait a bit longer for the 'all clear'. Cooper has attended physiotherapy from five months of age, first weekly and then monthly. He currently has checkups every two months as he has caught up developmentally.

We have found Cooper to require a large amount of affection and reassurance over the past year and he is a persistent crier. However it's hard to tell if this is an after effect from the meningitis or just a personality trait.

Fortunately cases of meningitis are rare in very young babies but unfortunately for us there was little information or any cases studies we could access at the time. I think there needs to be a lot more awareness of symptoms in young babies as often the 'normal' signs are not present. Your baby still may have meningococcal meningitis, even if there is no sign of a rash. Your instinct is your best tool as a parent, as a quick response saves lives and improves outcomes.