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Elliot E's Story

27th July 2023

Kate from Essex was looking forward to introducing her new son to his big sister. But viral meningitis, and the ongoing after-effects of her son’s diagnosis, meant the newborn days turned into months of worry

Elliot’s story

"Never ever let anyone tell you that you are overreacting. If you are worried, please get your baby seen."

"My son Elliot was born full term with a normal delivery. He’s my second child and I was super excited to get him home to meet his big sister.

“I had a great experience with my first baby and was expecting the same for my second. However, as he was having his newborn checks, I was told his heart rate was a little high and his temperature a little low - a sign of possible infection and he would need to stay on the ward for at least 24 hours for monitoring.

“Despite a sleepless night I was told everything else looked ok and we were discharged 24 hours later - I believe this to be the start of Elliot’s meningitis, though we will never know.

Something was wrong

“Once home, the first few days were bliss. I couldn’t believe I’d been blessed with such a chilled, happy baby considering my first was so energetic and active from birth. We settled into becoming a family of four pretty well with a few trips out here and there in the first week.

“Even though all seemed well, something was telling me something was just ‘off’. As we entered the second week of being at home, I had a feeling I couldn’t shake that Elliot was just a little too sleepy.

“I decided to ask for an extra health visitor check as I felt Elliot had a strange pink/purple tinge to his skin. He also slept way more than I remember a newborn doing, even in the early days. I was having to physically wake him for feeds.

“The health visitor assured me it was just my newborn anxiety and he was fine, but if I wanted his jaundice levels checked I could pop to hospital to check them. I decided to opt for a hospital check as at least a doctor would give him a once over.

Spot blood test

“Unfortunately, due to the time of year, the ward was rammed with children with bronchitis, so we were ushered into a room to do a spot blood test and then told to leave as the jaundice levels came back as ‘normal’.

“I begged to see a doctor but they told me the ward was too busy. I remember feeling angry that nobody cared for my one-week-old baby. Children were running around laughing and joking on the ward, yet mine was so lethargic and sleepy.

“When I got home I told myself I’d see how Elliot did overnight with his feeds and see if I could keep him awake a little more the next day, and if not, I’d go to a GP first thing.

“By this point my parents had travelled down from Yorkshire to meet their grandson. My mum had asked why Elliot was in a short sleeve vest in winter and I remember telling her, ‘I think he feels a little hot’. I’d had him stripped down for half a day and I couldn’t help but think he still felt hot. I took his temperature, it was slightly raised at 37.5. I immediately called 111.

“111 advised that if Elliot was having wet nappies, had no rash and was feeding OK that I could wait to see a GP in the morning. This didn’t sit right with me and I wanted him seen straight away, but unfortunately all out of hours appointments were full.


“Elliot slept most of the day and was still sleepy into the night. I took his temperature on an hourly basis.

"That night was one I’ll never forget. Elliot screamed like I’d never heard before. Me handling him seemed to make him scream more, when usually it had the opposite effect. His movements were jolting and he seemed really disturbed and unsettled.

“I took his temperature through the night and I didn’t sleep for a second. So at 5:30am that morning I left the house without waking my fiancé or toddler and headed to A&E. I half expected them to send me to the GP section of the hospital but within a few seconds of being in triage I knew this seemed quite serious.

“Elliot’s temperature was now 39.2. He hadn’t woken for a feed for five hours and I found it difficult to keep him awake. I broke down in the triage room as the nurse called for emergency assistance to see to, as she described, ‘a very poorly baby’.

Lumbar puncture

“We were immediately placed in paediatric resus. I had been to A&E previously with my eldest but I’d never seen so many doctors, particularly within 15 minutes of arriving. A consultant came over and told me they were to insert a cannula, start IV antibiotics and take some bloods. This is when she asked permission to do a lumbar puncture.

“I broke down in sheer fear as I knew lumbar punctures were linked to serious infections.

“Due to Elliot’s age and presentation we were taken to SCBU rather than the usual pediatric ward. Elliot’s heart rate was extremely high. He had a temperature of 39.6 and a swollen stomach. This is when meningitis was first mentioned and we were told to prepare to be in the SCBU for a short while. They were testing whether Elliot had viral or bacterial meningitis.

“Within the first day of arriving there Elliot deteriorated. We were moved from special care, into high dependency then into intensive care. The days that followed waiting for results were long.

Viral meningitis

“We were told it was viral meningitis and he was taken off the antibiotics and cared for a further three days. After several cranial ultrasounds we were allowed to go home. I was so nervous to leave hospital as I still couldn’t shake the feeling that this wasn’t over, which it wasn’t.

“The following 3 months consisted of repeat admittance into hospital. Elliot had spiking temperatures on a daily basis, jolting movements, was very sleepy, irritable and didn’t feed well.

“He had a further four lumbar punctures, IV antibiotics, an X-ray, MRI and cranial ultrasounds. The doctors concluded it was repercussions of the meningitis and he should get better in time.

Viral meningitis is not well known or spoken of as much as bacterial meningitis. The after- effects of viral meningitis were long and painful for Elliot. He was able to enjoy life outside of the hospital after he reached four months of age but spent his time before then quite ill.

Anxiety and worry

“The anxiety and worry I have around Elliot’s health still hasn’t left me. I carry a thermometer wherever I go and am extremely careful around illnesses.

“I wish I’d reached out to Meningitis Now for support when he was first diagnosed as it was such a lonely place to be in, particularly the months after hospital when Elliot continued to be ill and doctors couldn't tell me why, only that it was linked to his meningitis.

“As a new mum you often get doubted and it's assumed that you are overreacting and being overly worrisome. Never ever let anyone tell you that you are overreacting. If you are worried, please get your baby seen.

“We are their only line of defence when they cannot speak for themselves.

“I’m so thankful Elliot’s illness wasn’t any more serious and my heart goes out to all families affected by all types of meningitis.”