Meningitis in your words

Tom van Lonkhuyzen's story

  • Location: England
  • Categories: Viral
  • Age: Baby 0-1
  • Relationship: Parent
  • Outcome: Recovery with after effects
  • After effects: Speech problems
Tom van Lonkhuyzen

What will always stay with me is where the word ‘Age’ was printed on their charts’, in the field adjacent to it was ‘25 days’.

It started on a Friday morning, I noticed that Tom, one of my newborn twins, was feeling hot and I checked his temperature, which was up. I rang the VHI Nurseline and they told me to strip him down, which did bring it down. He vomited a few times that day and as he didn’t seem to have a temperature, I was starting to think that maybe he had reflux. That night he vomited again but so much that when we picked him up, we saw the milk was dripping out of bottom of his wicker Moses basket and pooling onto the floor beneath it

"I know my husband thought I was over-reacting but call it instinct"

By the Saturday he had vomited again and the temperature was back. I know my husband thought I was over-reacting but call it instinct, I insisted on bringing him straight to the hospital rather than going to our out-of-hours GP service. We left his twin sister and our other daughter at home with my mother, while we went to OLHSC in Crumlin to get him checked. I felt like a bit of a time-waster, I really believed it was something innocent like an earache and that we’d be sent on our way again with a prescription for an antibiotic. I now know that a temperature in a newborn is something to be taken very seriously.

Due to his age, a full suite of tests was performed. We were told to walk to the other end of the hospital while they performed a lumbar puncture to take a sample of fluid from around the spinal cord. There followed hours of waiting to get the results of all the tests but when the nurse came into the room and asked us to go home and bring in his twin sister Bea, we knew something was up.

"I knew then that it wasn’t going to be good news"

A knot formed in the pit of my stomach. Then finally, while my husband was gone home to get Bea, the Doctor returned with his file and I thought that finally we are going to be told what is going on but when he saw that I was there alone, he said he wanted to wait until my husband was there with me. I knew then that it wasn’t going to be good news.

When my husband returned, Bea was literally taken from his arms and rushed off to be tested too. When my husband was back with me the Doctor came into the room. We were told that Tom’s white blood cell count in the CSF (cerebrospinal fluid) sample was 330 and it should have been less than 10. We were dealing with meningitis, and were told that it was most likely bacterial but this couldn’t be confirmed until we had the results of the cultures.

"I’m still a bit trigger-happy with the thermometer these days"

When he said the word ‘meningitis’ it was such a surreal sensation. As a parent this is the one word you do not want to hear. It was a hollow, wretched feeling. Never in a million years when we brought him to the hospital did I think we would be told my little boy, only 25 days old, and possibly his twin sister too had meningitis. I had watched parents talking about losing children to this disease on TV and would have talked about with my friends afterwards, about how it is every parent’s worst nightmare and I couldn’t believe I was facing it myself. All I could think of was ‘we have just been given these babies; there is no way I am letting them be taken away from us’. I remember I really wanted someone to tell me that they were going to be okay and I kept pressing the doctors and nurses looking after him to say that he would alright, but of course they have seen the very worst of cases and they just can’t tell you that. I found that very hard.

Fortunately our daughter’s lumbar puncture results were clear for meningitis but both babies were immediately put on three different high dosage antibiotics intravenously while we waited for culture results. The next few days were tough. At the time I went into shock-mode - maybe it’s the body’s way of getting us through difficult times, getting us to do the things we need to do. In the end results showed that it was viral meningitis, which was a relief and thankfully we all came home again after six days. I am very aware that some parents aren’t so lucky.

I’m still a bit trigger-happy with the thermometer these days and do tend to panic if I see any sort of blemish on my children’s skin but I’m delighted to say that both twins are doing fantastic. Tom’s speech seems to be delayed, which is possibly an after effect of the meningitis but otherwise he is a very energetic, happy and loving little toddler. And every day when I kiss his silky hair, I am reminded once again of how fortunate I am.

Caroline Finnerty
August 2013