Meningitis in your words

Lucy Jo Cummings' story

  • Location: England
  • Categories: GBS (Group B streptococcal)
  • Age: Baby 0-1
  • Relationship: Parent
  • Outcome: Full recovery
Lucy Jo Cummings

Lucy was born by elective c section at 37 weeks on 12th Feb 2014.

She was "showing sign of an infection" had a low temperature and was "grunting" so she was taken to SCBU to be checked and was put on antibiotics "to be on the safe side" for 48 hours. After 48 hours we were allowed home.

A week later she seemed a bit out of sorts and was sleeping an awful lot and even slept through a couple of feeds, we put it down to taking her out in the fresh air for long periods of time, but something was niggling me so I made a mental note to mention it to the midwife the next day when she was due to come round and sign us off.

On day 10 she wasn't right - I couldn't put my finger on it but knew there was something, I put her in the bath to try and rouse her a little bit, it seemed to have the desired effect, dressed her took her downstairs and gave her to dad to feed her.

A few minutes into the feed he suddenly held her up in the air - she was grey!!! I felt sick, he said something’s not right, ring an ambulance!!! She had stopped breathing, the call handler talked us through what to do and luckily within a few minutes 2 ambulances arrived and 4 paramedics came rushing in.

Lucy was already on the floor and they just took over, they managed to revive her, it was quite honestly the scariest thing I have ever been through.

"She said the words "bacterial meningitis" and it was just like I had been punched in the stomach!"

I went in the ambulance with them and they took us to UHCW in Coventry and she stopped breathing several times on the way.

When we arrived in Resus there was a team waiting for us and they started working on her straight away, I just sat there looking on helplessly while they worked on my tiny baby. I felt like I was starring in my own episode of 24 hours in A&E, they explained they needed to put her on a ventilator as she was too weak to breathe on her own and she was being transferred to Birmingham Children’s Hospitals intensive care unit.

Lucy's dad Jamie was taking care of our other daughter Daisy who had witnessed the whole thing, poor thing had to be shipped off to Nanny's so we could be there for little Lucy.

The mobile intensive care team arrived to take her to BCH and I chose not to travel with her but to follow behind with Jamie, I feel really guilty for this now but looking back I know it’s because I was petrified she was going to die on me.

We spent the night in chairs next to her bed in intensive care in a strange hospital in a strange city just hoping and praying that she was going to make it.

The consultant at the first hospital had explained he thought it was just something like the flu but her tiny body was struggling to cope with it like you and I could so I clung on to this and somehow managed to convince myself she was going to be ok.

Next morning a doctor came and explained that they were going to do a lumbar puncture "just to rule out anything sinister" but it wouldn't be very nice to see so we were sent out and went to get a coffee. She also explained that the results would take about 24 hours to come back.

When we went back after about 45 minutes she sat us down and talked for what seemed like hours and then she said the words "bacterial meningitis" and it was just like I had been punched in the stomach! The words every parent dreads hearing, I instantly thought, she's going to die or she's going to lose limbs or be severely disabled. I don't think either of us really took it in. She did say that she had seen babies recover from it and so that gave us some hope.

Lucy spent 4 days in intensive care and was then transferred back to Coventry where she spent a further 2 weeks recovering and receiving antibiotics. She had a few check-ups after this including hearing tests and she appears to have made a full recovery.

She is now a happy and very mischievous almost 3 year old who continues to amaze us every day.

Meningitis has definitely changed our lives but we understand we are so lucky to have Lucy - so many other stories unfortunately end differently.

I was diagnosed with PTSD about a year after Lucy's diagnosis and had counselling and am now completely fine.

As a family we are always doing what we can to raise awareness of this awful disease.

Amanda Gray
November 2016