Meningitis in your words

Rhianna Curl's story

  • Location: Scotland
  • Categories: Bacterial meningitis
  • Age: Baby 0-1
  • Relationship: Parent
  • Outcome: Full recovery
Rhianna Curl

It was December 2007.  Our beautiful baby girl Rhianna was six months old and we were looking forward to our first family Christmas.

The first time Martin, my husband and I realised something was wrong was when Rhianna began to bring up her feeds.  She usually always kept them down.  We kept trying to feed her but she kept bringing them up.  I lay beside her through the night and held her on her side to stop her choking.  It was then that I noticed that she was burning up.  I gave her Calpol to try and get her temperature down but she brought that up as well.

Rhianna began screaming as if she was in agony.  I took her through to the living room, which was brighter than her nursery.  She squinted her eyes like she was looking at the sun and turned her face towards me trying to get away from the light. We thought about meningitis - we were both trained First-Aiders and had heard about the rash.  Rhianna didn't have one.

At this stage I wasn't sure what to do.  I was worried but didn't know if I was overreacting?  I had been bothered by postnatal depression so I really wasn't sure.

We were living down in the Borders at this time and we took her to the nearest A+E, which was 16 miles away.  Unfortunately the On Call Doctor missed what was wrong.  He diagnosed an ear infection then said that perhaps we were being overprotective first time parents.  Our parent's instinct told us something wasn't right but when you have postnatal depression you just think it's another thing you've messed up. The Doctor gave Rhianna some banana flavoured amoxicillin liquid, he told us to give it to her for four days and that she would be fine after that. 

We took her back home in the car where she was sick again.  The banana medicine came up and not much else.   She was sick for the rest of the night until all she was bringing up was bile.

At 8.30 the next morning we phoned our GP. She came out to visit at 12.30 and said there was no sign of an ear infection.  She asked us to try a weaker formula milk and if she was still bringing up her feed to go back to Borders General Hospital.  We waited one hour but by this stage were so worried we took her straight there.

On the children's ward she was given a presumed diagnosis of having a virus but had further tests done on her blood and urine.  When nothing showed up, again we were treated like over protective parents, as they couldn't find anything wrong.  Finally just to be sure a lumber puncture was done.  The fluid taken from around her brain came out cloudy.  This immediately worried the doctors.  Cloudy fluid meant to them probable bacterial meningitis.

She was put on a cannula and antibiotics were given that would cover and kill a range of bugs.

"She was so lifeless she didn't even have the energy to cry. I was in pieces. Had we left it too late?"

By this time Rhianna was so lethargic, she looked like a little zombie.  She was so lifeless she didn't even have the energy to cry.  I was in pieces.  Had we left it too late? I felt so guilty and thought I had been a bad mum but soon that feeling turned to anger, how could the Dr at A&E have missed it?

Martin stayed in with Rhianna overnight. The next morning her skin was grey, her lips blue and all she could do was stare into space... this was not our normal peaches and cream mischievous little girl. 

At 7.30 am the nurse called the Doctor and asked him to check the test results - they confirmed bacterial meningitis.  Luckily the antibiotic they had put her on the night before was the one she needed.  One of the doctors said that it was a ferocious strain of bacteria that could kill a grown man in 4 hours let alone a little baby and that 1 in 10 people had the bacteria in their throat without ever getting meningitis!  This put the fear of god into us, but I also felt reassured that I was a good mum as if we hadn't pushed the doctors it would of been too little too late!  Our parental instinct told us something wasn't right.  We fought and pushed to get her seen.  I felt glad we had got her into the hands of people who could save her life - we were now able to concentrate on her getting better. 

"For 4 days she just lay there - her body limp - staring into space."

For 4 days she just lay there - her body limp - staring into space.  She was kept in isolation on the children's ward.  Anybody who came in had to wear aprons and wash their hands with alcohol gel. At first we thought this was so no-one caught it from her but it turned out it was because her immune system was so low they didn't want to risk her catching anything else as they didn't know if her little body could cope.   Martin and I were given antibiotic tablets to kill any of the virulent bacteria that might be living in our throats.  This was so the bacteria wouldn't go on to cause us, or others we came in contact with, an infection.

On the 4th night she let out a cry.  She started screaming with agony and kept crying all night.  We felt a sense of pure relief to hear her cry.  The drugs were working and she was starting to recover.   She was given ibuprofen and paracetamol to keep her pain under control and was kept on antibiotics for another 6 days.

She was moved to a bigger room for the remaining 6 days as one of us was with her at all times and it was getting a bit cramped in the tiny room she was in.  All of the staff were absolutely brilliant.  They brightened up her room with Christmas decorations and gave Rhianna and us a pile of presents that had been donated by local businesses. It made us feel much better and cared for - nothing was too much trouble.  On day 6 we got Rhianna started back on solid food - it was her favourite - porridge with mango chunks for breakfast and banana custard for dinner...we didn't care what she ate as long as she ate!  

In the next few days Rhianna seemed like brand new.  We started to look forward to getting out of hospital, but I still felt scared.  The care she had received had been so thorough - what if I missed something and she got ill again?

We got out just before New Year's Eve and decided to have our own special Christmas - albeit a few days late! 

Rhianna is two years old now and is happy, mischievous and full of life.  She has had her follow-up hearing and eyesight tests.  Fortunately it looks like she has no after effects, other than some discolouration of her teeth. We expected this though as the antibiotics she was on had been known to do that.  She has had chickenpox, coughs and colds, but she seems to be strong and easily fights off any infections.  She is in the top 2% for weight and height for her age.

The health visitors say her speech is developing as normal and her coordination is brilliant.  We are so glad to have our little girl with us.  We were so close to losing her.

I think it is so important for parents and doctors to know all the symptoms of meningitis.  It is also very important to know that you don't always get a rash - Rhianna never had one.  Its absence was one thing that gave us false reassurance.  I have learned recently that only around 40% of children with the disease who are younger than a year old get the rash.  Some types of bacteria don't cause the rash and if the bacteria are mainly around the brain and not the blood the rash can also be absent.  Our local GP didn't realise you didn't have to get the rash and she found that when she asked the other doctors in her surgery.  Only two of them knew this!

I would like to tell parents never to be afraid to take your child to the doctor - The doctors would much rather see a child unnecessarily than see one too late!  We tell everyone we come across about the disease and have distributed literature from the Meningitis Research Foundation to our local Nursery.  We believe research can inform parents and health professionals and we hope that other parents will read our story and know the symptoms to look for. If Rhianna's story can save even one child then all that she went through will of been worthwhile - after all that child could be yours.

August 2009