Lewie's Story

Amanda and her family have a strong appreciation of just how fragile life is. Her son Lewie was diagnosed with viral meningitis at one month of age. The memory of his battle to survive and the stress of the days following his discharge from hospital haunt Amanda. Lewie is now a fit and healthy five year old. Amanda shares Lewie's story to help others understand how meningitis impacts the whole family.

Lewie was born 7.5 weeks early. He was called a "star" baby by the NICU doctors as he fought oxygen to breath on his own when born and needed very little assistance for a prem baby.

At just 16 days old, Lewie came home. Everything went really well until he uncharacteristically vomited while feeding one night two weeks later. I put him to bed as usual but was surprised when I woke naturally the next morning as he'd not woken for a feed in the night. When I walked over to his bassinet, I noticed he was just lying there awake and didn't look at me when I spoke to him. I picked him up and he was slightly floppier than normal. I rushed him downstairs to show my Mum who thought he looked jaundice again too.

When he wasn't interested in feeding I paged my midwife and called the dr. Neither of them was available to see us so I rang the NICU and told them I was bringing him back in. We must have arrived about 10am in the morning. By this stage he was quite mottled and had a very extended stomach. They did a number of tests and x-rays on him trying to work out what was wrong. When they hooked him up for monitoring, they noticed he was having a number of bradycardias.

The doctor said they didn't think it was meningitis but he wanted to test him to rule it out. By this time it was quite late and they suggested we went for dinner and not watched as it wasn't pleasant. I'll never forget walking back into the NCIU after dinner with my husband - they saw us arrive and rushed over. I knew the news wasn't good. They confirmed it was meningitis and started him on 3 antibiotics (in case it was bacterial) and caffeine.

I remember sitting by his incubator with tears running down my cheeks willing him to breath. There was nothing I could do to soothe him - when he was upset as a new premmie in the incubator I could put my hand on his head and rub his forehead with my thumb and it always calmed him. The pain in his head must have been horrendous because when I instinctively went to do this he wriggled in pain. After a while he was intubated as his breathing had deteriorated.

He was in a much worse state now than he'd ever been even born so early. There was nothing we could do, it was just a waiting game.

Lewie was in isolation; we had to wear gowns and gloves when we went to visit him. The staff were very supportive - especially his incredible paediatrician, who researched for answers to the numerous questions I asked him. Normally just parents are allowed in isolation, but when my husband worked or was with our older son, the nurses allowed my mum to sit with me for support.

They hooked him up to a brain monitor and it was relieving to see his brain activity seemed unaffected. Eventually Lewie started breathing on his own and then feeding again and after a week we were able to take him back home.

He is now at school and is pretty much unaffected by the whole ordeal. He was monitored closely by his amazing pediatrician who was there in NICU when we found out the news. After about 4 years he was signed off as a normal, healthy child. He has some gross motor delays, but it's more likely that his prematurity caused that and now at 5 years old, it's very difficult to see the difference between him and his peers.

It's been more difficult for me than I thought. You think that once they're home all the stress is over. Actually for me dealing with what happened afterwards is almost just as hard. When you're there in the moment you're forced to be strong, but afterwards you can think about it much more, it's almost like it haunts me.

I now take him to the doctor much more often than I ever took my first son and worry about him much more too. I often used to find myself using his meningitis as an excuse for being more protective than might be necessary. I also still find myself teary when I think about when he was sick. I don't know why, maybe it just makes you realise that life is more fragile than you often think.