Lulu, from London, tells us how inspiring she finds her little boy Harrison, who contracted pneumococcal meningitis at five months old
Their journey has not been easy, but Harrison is doing well, and Lulu is so proud of him.
“When Harrison was five months old, we went to meet my friend for lunch. He was his usual self, smiling at the waiters and being very sociable. 24 hours later, he was being kept alive by a ventilator on his way to Paediatric Intensive Care at Great Ormond Street Hospital.
“The evening before he wasn’t himself - a high fever and a bit floppy. We called 111 and they sent an ambulance, but all his numbers were fine. Due to Covid they said to keep him at home and call an ambulance if he got worse.
“We kept a close eye on him, and in the morning, we heard him grunting, so we called an ambulance again. The paramedics said his blood sugar was very low, and he was taken to A&E on blue lights. We were scared but were told they’d just sort out his blood sugar and he’d be fine.
Straight to resus
When we got to A&E we were sent straight to resus. Within seconds there were about 10 doctors and nurses surrounding Harrison - I couldn’t see him at all. It was in the middle of the strongest covid restrictions, but they let his dad in - a sign of how serious they knew it was.
The on-call consultant was called in from home. We were told Harrison was having seizures and they didn’t know why. They were going to have to take over his breathing for him because he was so poorly, and were starting him on a dose of antibiotics.
“When I asked if he was going to be ok, they said “we’re doing everything we can” - my heart sank, and I was sick.
“I’d just been told that they didn’t know if my baby was going to survive.
“We were allowed to see him in theatre before he was intubated and were brought back to be with him as soon as he was on the ventilator. Then they took him for a CT scan. After seeing the scan, which showed something was happening in his brain, they decided he should be transferred to Great Ormond Street.
“We waited with him for hours while a specialist team transferred him and all his breathing equipment to a children’s ambulance. Because of his brain injury, they had to be extremely careful and every single wire was moved so delicately - the care with which they did this was incredible but the fact it was needed was utterly heart breaking.
Tiny and helpless
“We were transferred, on blue lights, to Great Ormond Street, where Harrison was admitted to Paediatric Intensive Care. He looked so tiny and helpless - he needed to be in a proper bed rather than a cot as they could control his position better, to protect his brain. That evening, they told us they believed he’d had a stroke. We were lost for words.
The next few days saw lots of tests, and after taking fluid from his spine they established he’d contracted pneumococcal meningitis, despite having had his jabs - which meant Public Health England had to be notified.
“The only silver lining was that the antibiotics they put him on immediately were the same needed to treat his meningitis, so there was no delay in treatment.
“We knew it wouldn’t be a quick visit. A charity put us up in accommodation right by the hospital. We felt so guilty leaving him at night but all the nurses told us we needed to look after ourselves, and we wanted to have as much energy as possible for when he woke up.
“We were told Harrison wouldn’t leave intensive care until he went 24 hours without seizures. He was there for a week.
“Watching him have seizures was devastating. One morning we arrived to hear he’d had one that lasted 45 minutes. The doctors took time with us to sit down and explain what might happen when he woke up, and, in their words, “manage expectations”.
“Finally, the seizures stopped, and he was taken off the ventilator and transferred to the high dependency unit of the neurology ward.
“We stayed there for another two weeks. Because of all the medication he’d been on, Harrison was suffering from drug withdrawal.
“There are no words to describe how upsetting it is to see a five month old going through something like that.
“It was at this point that we began to see the impacts of his brain injury. He was like a newborn, but at five months old. He couldn’t hold his head up, and he really struggled to swallow.
“We worked really hard with the hospital’s speech and language therapist to try and get him using a bottle again, but his brain injury had really impacted his swallowing, so we had to use a feeding tube for another three months.
Made it home
“After three weeks at Great Ormond Street we made it home - armed with all sorts of medical supplies and equipment.
“The last few months of baby classes before I was due to go back to work turned into appointments with epilepsy consultants, community nurses, paediatricians, speech and language, physiotherapy, occupational therapy and the dietician.
“We had to learn how to insert his feeding tube for the times he would inevitably pull it out, and have his head circumference measured weekly to check there wasn’t any swelling.
“Everything revolved around what had happened. Luckily our employers were incredibly supportive and gave us all the time we needed to adjust to our new normal.
“Fast forward to today, and we feel so lucky. Harrison is 20 months old, and most people have no idea he’s ever been poorly. He’s due to come off his final medication in the coming weeks, and despite some developmental delays he’s such a happy, cheeky boy.
“The silver lining is that I ended up adding another six months onto my maternity leave and feel really privileged to have spent so much more time with Harrison in his first few years than planned.
“I think there’s still a lot of trauma from the whole experience, and I think about it every single day. I particularly struggle with the unknowns around his development, especially when it’s such a talking point for all parents.
“The sense of pure injustice about it all is something I don’t think I’ll ever come to terms with.
Football every weekend
But every day, when I’m struggling, I remember when the goal was simply for him to survive. Then the goal was for him to move, then to smile. And now we take him to swimming and football every weekend.
“In terms of families who experience something like this, we are the lucky ones.
“But mainly, I don’t think I’d ever have imagined being so proud of my little boy. He was - and is - such a fighter and at four and a half months he showed more strength than anyone I’ve ever met.
“His strength gets me through every single day and he will always be my inspiration.”