Now 8, Dexter is doing well and making his parents proud every day, as Nicola, from Blackburn, tells us here.
“Dexter was born on 18 January 2013. He was our first child, so like all new parents, everything was a novelty and we took dozens of photos.
“At our midwife visits we were told he was losing weight and we were given extra advice and midwife visits. He was officially classed as ‘failure to thrive’ (not a term used any more) and we were told that if he'd not gained weight at the next visit he would be going back to hospital.
“The next day the midwife visited and Dexter had gained a little weight and at subsequent visits his weight crept up. We voiced concerns to the midwife about Dexter possibly having reflux and that we were unable to put Dexter down, he wanted to be held all the time even throughout the night. We were told this was normal for a new-born and our concerns were dismissed and Dexter was discharged.
Skin too big for him
“The following day I had booked an appointment with our GP to talk to her about Dexter possibly having reflux. At the appointment she undressed Dexter to weigh him and examine him and she said she was shocked at how ‘skinny’ he was and that his ‘skin looked like it was too big for him’. She decided to send us to the children's assessment unit at the local hospital for them to check Dexter over and put him on a feeding plan.
“At the hospital we were given advice and a plan to get Dexter putting on weight and we were about to leave when a nurse asked us for a urine sample. Apparently they were doing them at random and to this day I've no idea why but I'm so thankful they did! Dexter's urine was showing infection markers, but we were reassured that it was most likely a urine infection.
“We were sent home and told we would get a call the following day to advise us about treatment once they knew which bacteria they were dealing with. We were reassured that Dexter would most likely need antibiotics at home or worst case to be admitted for three days for IV treatment in hospital.
Getting more sick
“That night, for the first time since he was born, Dexter slept in his crib and I remember waking up so happy and proud. But, when I think back now, it was because he was getting more sick.
“The hospital phoned us at around 11am and asked us to pack a bag and come in. His urine infection was caused by E. coli, which is antibiotic resistant so he needed treating in hospital. When we arrived at the hospital they told us they needed to take bloods from him and I remember how they struggled to get a needle into his tiny hands. Dexter screamed and cried and it was so hard l just wanted to yell at the doctors to stop.
“They couldn't get a needle in and had to get blood by squeezing it from tiny pin pricks in his hands and feet. The bloods came back showing the infection was in his blood and so poor Dexter had the ordeal of having to have a lumbar puncture. They didn't let us in the room for that procedure but I could hear Dexter's cries from down the hall.
In hospital for 24 days
“We were told Dexter had E. coli bacterial meningitis. We were told we'd be in hospital for at least three weeks for treatment. Thankfully, due to a random sequence of events, we had caught it early and Dexter responded well to treatment.
“After 24 days in hospital we finally got to take our baby home. Dexter had numerous check-ups, tests and follow ups and passed all with flying colours. He met all his milestones and it looked like we could just put our meningitis experience in the past.
“It wasn't until Dexter was about five and we had been having concerns about recurrent nightmares and social and emotional issues at school that a family member who had been through meningitis herself suggested that Dexter could have an acquired brain injury.
Meningitis Now supported us ever since
“I contacted Meningitis Now through the Helpline and they, along with the Child Brain Injury Trust, have been supporting us ever since.
“We have been told we might never get an official ABI diagnosis as there was no baseline for who Dexter was prior to his meningitis, but that hasn't stopped these amazing people helping and supporting not just Dexter but all of us.
“Dexter is 8 now and doing so well. He is an incredibly clever, loving and thoughtful boy and we are proud of him every day.”