Meningitis in your words

Theo Kirwin's story

Location: England
Categories: Pneumococcal
Age: Baby 0-1
Relationship: Parent
Outcome: Recovery with after effects
After effects: Hearing problems

Theo our second son, was born in 2004 before the pneumococcal jab came in. When he came along he was the most laid back baby, in contrast to his big brother Arrans' manic energy.

When he was four months old he had an upper respiratory tract infection just before he had his second set of jabs. Two days after the jabs he developed a temperature which didn't respond to Calpol and was crying really miserably, which worried me as it was out of character. I called NHS Direct and they sent us to the out of hours GP. I gave him a tepid bath and by the time the doctor saw him, had managed to get his temperature down, although he was still very miserable. I explained to the doctor that he just wasn't right, but she thought it was just a virus. I remember her checking him over and saying "there's no rash, thank God". I knew that this meant she had ruled out meningitis.

Later that evening he started to vomit and we rang the GP out of hours service again. They told us it was quite normal and to ring again if he was still bad in the morning. I spent that night with Theo in bed with me. He would sleep for a while and then wake up screaming and waving his hands in front of his face

"My baby will never grow up properly although his body will continue to grow and he should live a long life."

The next morning he had taken no milk and his nappy was dry; so we rang the GP out of hours service again. They told us to try and get some fluid down him and they rang back two hours later. They seemed happy that he had taken about 20ml of water (he was breast fed) and told me to just wait it out and that he would get better. I didn't feel right about this but I waited.

By the next morning he was making a strange cry and I rang my own GP. I couldn't get an appointment until the afternoon. Even though I knew something was very wrong the first doctor had ruled out meningitis in my mind. That afternoon my GP took one look at Theo and told me to take him to hospital. It all seemed completely unreal. I still didn't panic because I had been told there was no rash so it wasn't meningitis.

By the time I reached the ward 20 minutes later, Theo was grey and unresponsive. He was given a lumbar puncture and given broad spectrum antibiotics. The doctor told me he had pneumococcal meningitis. Later he started to seize and was ventilated.

At 6am we followed the ambulance in a daze to the local PICU. That night we were told that Theo might not make it, but he was strong and he held on.

We spent a week in the PICU during which time he had brain scans. We were told that he had very little brain activity and that his recovery would be unpredictable, he could be anything from the way he was then, seizing regularly and pretty much a vegetable, or might just be deaf with a bit of a limp! So, plenty of room for hope amidst the grief.

Theo was transferred back to our local ward for six weeks. When we finally got him home we couldn't cope and had to send him back on day release! He hated to be touched, threw up whenever we moved him and seemed to have lost his hearing. This was confirmed eight weeks later and he was fast-tracked for cochlea implants at the age of seven months. Another traumatic stay in hospital although this time with a good outcome.

We have spent the last ten years gradually coming to terms with what happened to Theo and we have finally begun to feel a bit more normal. We have a new adapted home and full care now which has allowed us to relax and lead a much easier life.

Theo now loves his left implant and asks to wear it by tapping his head. I honestly never thought I’d see that happen! He is unlikely to speak but he is developing some ways of communicating. He is very capable of getting a message across when he really wants something!

Theo doesn't walk, but can do good standing transfers. He has just started to use a walker and is really enjoying it. His development is arrested somewhere between 12 and 18 months. My baby will never grow up properly although his body will continue to grow and he should live a long life. He will always need full care and this is very hard work. He is mostly a happy, beautiful soul and loves his wonderful school.

I used to feel anger and grief most days and have to say that I sometimes felt it would have been better to have lost him. But after all this time and with all the support we now have I rarely think about what he would have been like if the meningitis hadn’t happened. He is just my son and doesn’t suffer with any of the anxieties and stress that my other children have to face like exams and bullying. Theo simply lives and just seeing his smile lifts my heart when I’m down.

MRF have been wonderfully supportive, letting us know that we are not alone and giving us a safe place to say the un-sayable things.

Jo Kirwin
May 2010
Updated May 2015