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Niamh's story

24th April 2018

Clare thought her baby Niamh had contracted the cold that had been hitting the whole family, but the youngster had something far more serious. As Niamh’s symptoms developed, their GP sent her straight to hospital, where viral meningitis was diagnosed

Niamh's story

Since then Clare, from Buckingham, has been an avid campaigner for awareness and understanding of viral meningitis. She tells their story here.

“Niamh’s dad Ollie and her 3-year-old brother Joshua were just getting over colds and I had just been hit hard too. It wasn’t nice but it was inevitable that our 6-week-old daughter would get it too.

“The health visitor recommended a saline spray to help Niamh’s blocked nose but otherwise told us to just ride it out, offering her plenty of breastfeeds as she was too young for Calpol.

“I was starting to feel that I was coming out the other side and we went to visit Niamh’s great-nanny while her brother was at pre-school. It was there that she started to feel hot to touch. She’d already slept more than usual and hadn’t fed much, so I was full and uncomfortable.

Trying not to panic

“On the way home we picked up a digital thermometer, which read 39 degrees. I immediately rang the doctor, trying not to panic but not convinced we were not at the 999 stages. I was so paranoid about being ‘that mum’ after post-natal depression with my eldest.

“Luckily, despite calling at 4pm, we were told to come straight down to the surgery. We hadn’t even closed the GP’s door when he announced: "That baby needs to be in hospital." Niamh was at this point mottled and almost limp in our arms.

“The doctor was on the phone to PICU in seconds whilst simultaneously taking temperatures and checking stats. Words cannot express how forever grateful we will be to that GP.

First convulsion

“The hospital was a whirlwind. We were hardly there before Niamh had her first of several convulsions due to her high temperature, which took around 30 hours to stabilise.

“I do remember being reassured when advised not to accompany Niamh to the lumbar puncture (around two hours after arriving at the hospital) that it was unpleasant but not unusual in one so young.

“Due to this, and a lack of understanding of the disease, meningitis never crossed my mind

“About 2am Niamh’s dad left as she was on fluids and oxygen and waiting to be moved to a ward. Around 4am a registrar finally mentioned what they suspected - meningitis. I crumbled.

Pumped full of medicine

“Around 7am our consultant rushed to see us and reassure us that, although she was now very uncomfortable, Niamh was being pumped full of viral fluids, antibiotics and preventatives to cover as many bases as possible whilst they waited on blood culture results to provide more information.

“The next day I was approached by the kindest research nurse. She talked me through my questions and hugged me through my tears, but also gave me great detail to her purpose on the ward and her job role.

“As soon as I was able to discuss it with Niamh’s dad, we both readily agreed to take part in an anonymous meningitis research programme, which follows the long-term physical and emotional after-effects of meningitis contracted by infants.

An absolute trooper

“Niamh was and is an absolute trooper. She came through that harrowing time. Being so young we will never truly know what is naturally meant to be and what is a result of this illness.

“Are her allergies, which surfaced a couple of months later, a direct effect? When she’s having a ‘meltdown’ and pulls her head, is it an unbearable headache - a well-known symptom? Or is she just a toddler dealing with all the emotions that toddlers do?

“One thing is for sure, our bright and beautiful girl has beaten and continues to beat whatever challenge is set in her way.

“I’ve become an avid campaigner for meningitis awareness since our story began but I am truly passionate about awareness and understanding of viral meningitis and its long-term effects on people. It is not just a cold, a touch of flu or just a virus that we all have to get on with it so you should too!

“Two years on and every illness for Niamh and her big brother now sends me into a panic. I was so practical and calm but it’s changed me. We’ll never know but we do suspect her allergies are a result of the heavy medication at such a young age. Even at the time the effect on her gut was awful – but this was a necessary evil.

“Niamh’s wasn’t the only meningitis story in our family either. In 2012 my brother in law suffered from viral meningitis and still feels the after-effects to this day.”