“Seeing her little smile again was the best feeling in the whole world.”
Liddy’s baby daughter Ruby recovered well from viral meningitis at three months but was then hit by pneumococcal meningitis at 10 months, leaving her with ongoing after-effects.
Support from Meningitis Now has been a big help to the family, as Liddy, from Reading, tells us here.
“My daughter has unfortunately had meningitis twice, the first time being viral at three months and the more serious being bacterial at 10 months.
“Ruby was a very happy baby and suddenly started to become very unlike herself. It was almost like the lights were on but no one was in. She had sickness, high temperature, no appetite and a bulging soft spot.
“I decided to take her to a walk-in out-of-hours service as something didn't feel right. During this visit she was sick just because the doctor opened her mouth. The doctor agreed she needed to go to A&E and red flagged her for sepsis.
"We went to A&E but unfortunately we were sent away with a diagnosis of teething and a suspected chest infection and given antibiotics.
Something just didn't feel right
“We went home that evening and Ruby couldn't keep anything down and just seemed floppy. Something just didn't feel right to me. She didn't have a cough or seem wheezy and was so unresponsive, so I went back to A&E and begged them to please look at her again.
“Whilst there waiting to be seen Ruby had her first seizure, which started all down her left side. The seizure got progressively worse and she stopped breathing and was rushed to resus, where they worked to get her breathing again. I was warned that she was seriously ill and to consider calling my husband in to see her as it wasn't looking good.
“She thankfully started to breathe again and they rushed her in for a CT scan with a suspected bleed on the brain. Once this was ruled out she was taken up to HDU and heavily sedated whilst they let her body recover.
"The next few days were awful as she battled more seizures and horrendous headaches – she couldn't open her eyes due to dislike of bright lights. She lost all muscle tone and movement on her left hand side.
Figured out what was wrong
“She went through lumbar punctures, constant IVs being put in and out where she was so little they struggled, an MRI scan, blood tests, and a long line fitted up her leg whilst they figured out what was wrong.
“Due to the antibiotics the split of red blood cells and white blood cells made it hard to determine what was going on. The board of infectious diseases decided it was best to say it was bacterial meningitis, but we would have to wait to see what type.
“Her MRI results came back and showed damage to her brain as a result of the meningitis. We were told they didn’t know if she would walk, talk or thrive. We had a long stay in hospital and Ruby fought so hard. She opened her eyes, she sat up and through physio began to use her left hand side again. Seeing her little smile again was the best feeling in the whole world.
“Eventually the cultures came back and we had a diagnosis of pneumococcal meningitis. Everyone had been looking for a rash, and the one thing this has taught me is please, please, please never wait for the rash. We were incredibly lucky and always remember you know your child best.
Incredible support system
“Meningitis Now has been incredible at just being a support system. The nurses on the Helpline are amazing. The relief I felt in just telling them my situation was immediate. I knew I had come to the right place for help.
"They helped me push to get a PTSD (post-traumatic stress disorder) diagnosis and helped with me understanding the medical jargon that made it hard for me to understand letters and reports.
“We had visits from a lovely support worker, who was there for us and so open to helping us in any way they could. We went on a Family Day, which was incredible, and I made friends who I still talk to now.
"We have done fundraising and they have been so helpful with providing us with signs and symptom cards, stickers and tops so we can spread the message to help people recognise the symptoms early.
Cloud that follows us
“Meningitis is an ongoing cloud that follows us around. Every day is just a wait and see with Ruby's development. We will have no solid answers, we just know it's given her a brain injury and we have to hope that her little brain finds new ways to do things.
"We are under consultant care now until she's an adult. We have to carry around medicine in case of seizures.
"I have been under EMDR (Eye Movement Desensitization and Reprocessing) therapy for PTSD and it's been a hard mental battle for us to come to terms with all this as a family.”
