Meningitis in your words

Jamie Malone's story

  • Location: England
  • Categories: Bacterial meningitis
  • Age: Baby 0-1
  • Relationship: Parent
  • Outcome: Full recovery
Jamie Malone

As a child I had bacterial meningitis, so it was something I thought I was very aware of.

Jamie was born 5 pounds on March 18th 2013, he was a quiet baby and never caused trouble feeding.

One day at 5 weeks old, out of absolutely nowhere, he started crying for what appeared to be no reason at all, he didn't stop, and even as he slept he wept. He cried as I changed him for bed and then he wouldn't take his bottle, I got some of it in to him but within half an hour he had projectile vomited it up. I took his temperature and it was 39 degrees, he seemed really stiff like he didn't want to move his body but I didn't think too much of that at this point.

It was late at night and I wrapped him up and brought him to hospital, he cried the whole car journey, but it wasn't a cry I would describe as his usual cry, again I didn't think of that either, I just thought he had a bit of an infection.

We got seen in a + e straight away, bloods were taken and he was examined. A doctor came to us a while later and said Jamie had constipation, he gave him a suppository and Calpol and sent us home.

Jamie seemed a bit more settled that night and the next morning, but still cranky. I gave him more medicine for constipation and thought he would be ok in a few days.

The next evening my mam was minding him to give me a bit of a break when the hospital rang telling me to get him back in straight away, they didn't say why, but we were going to take him back up anyway because he was crying worse than ever now.

We rushed him in and he was taken, nurses ran off with him, I never knew what was happening, then the doctor said words I did recognise - lumbar puncture.

"I thought a rash was the first thing he would have got, he never did though."

It was all a blur, I hadn't slept in 2 days and he had no rash. I thought a rash was the first thing he would have got, he never did though.

The doctor came back and told us she didn't have to wait on the result. The fluid was cloudy, my baby had meningitis and it was bad. They gave him 3 different meds until they figured out which type he had. It was bacterial and we were told to pray for the best, that our little boy was a very ill baby. I couldn't see him through the wires he was so tiny, but finally the crying had stopped. He wasn't in pain.

We were put in ICU in a private room and not once did he wake up or open his eyes over the next day, we couldn't hold him, we didn't know what damage had been done or what way he would wake up or if he would wake up. It was a terrifying time.

After 2 days we got great news his bloods were massively improving, he was awake and they were doing to take him out of ICU.

We stayed in hospital for 3 weeks and leaving felt great I had my baby and he was healthy.

"I told doctors he had meningitis again"

I was walking on egg shells at home, anytime he cried I jumped I was so afraid. 2 weeks after we got home I heard that cry again, the one I hadn't taken much notice of the first time around, I looked at him and I knew something was wrong, again we rushed back to hospital, I told doctors he had meningitis again, they said it was unlikely and I was panicking, he wasn't crying half as bad as before, and he wasn't vomiting although he was off his bottles but they said it could be teeth. It wasn't his teeth he had another lumbar puncture and again he had bacterial meningitis.

We caught it very early this time and we were told everything looked good, however the anti-biotics he was on were very bad for him and could cause massive side effects, we had no choice, he was put asleep to get a central line put into the vein near his heart as his other veins were all failing. Again we stayed 3 weeks and an extra week as caution during this time he had ultrasounds of his brain, CT scans, MRI scans and many other tests along with another lumbar puncture.

When we got sent home we got appointments for physio as he wasn't doing things he should for his age, we had audiology appointment, developmental appointments and he got haemoglobin transfusions for 3 months every week to boost his system back up.

Looking back it's all a blur I still can't look at baby pictures of him and I find it hard to talk about, but I know we were lucky.

He is in senior infants now and so smart he blows my mind sometimes. He is very hyper and doesn't sleep much or relax, he's very wound up all the time and we have more tests to come to find out why but he's here and he's healthy.

Ciara Lennon
Ocotber 2018