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Alex B’s story

2nd November 2017

Louise, from Bexleyheath in Kent, was busy feeding Alex’s five-week-old twin sister and their big sister when she realised something wasn’t right with him. Alex was a greeny/grey colour and his temperature was rising quickly. He was rushed to hospital where tests showed he had e-coli meningitis. Fortunately Alex recovered well. Louise tells their story here

Alex B’s story

“Alex was born, with his twin sister Francesca, 11 years ago, becoming a younger brother to his big sister Lizzie, who was only 2.

“He first became ill while we were in the maternity unit. His strange cry made me call the midwife but tests, including a lumbar puncture, were inconclusive and after taking antibiotics for a week as 'a precaution' Alex was better and we were all allowed to go home.

“I can remember clearly the afternoon a couple of weeks later, when I knew Alex was seriously ill. He was five weeks old. I still play it over in my head, trying to find a way to see if there was something more I could have done, a sign I should have spotted sooner.

Slow to wake

“That day Alex was slow to wake for his afternoon feed. I was busy feeding Francesca and getting tea for Lizzie so it was a while before I realised that something wasn’t right. I looked in at the twins and Alex was a greeny/grey colour.

“I took his temperature and, in five minutes, it went from 39 to 40 to 42 degrees. I knew something was very wrong but was trying hard to stay calm. My mum said ‘Louise, I think you know what you need to do, he’s very ill’.

“I called an ambulance and the rapid response car was there within minutes. It was surreal. I was holding Francesca, while the paramedic placed an oxygen cylinder in the cot. Lizzie, only a toddler, was scared of the stranger in green in her front room and the Tweenies continued to sing and dance on the television.

“Very soon after I went off in an ambulance, leaving a baby and a toddler with my mum and calling Aub to get the train back from London and meet me at the hospital.

First of many cannulas

“We were admitted to a room on the children’s ward and they inserted the first of many cannulas so that they could begin giving Alex IV antibiotics straight away. Alex was put on a heart monitor and had meds to lower his temperature. We were told they would do a lumbar puncture first thing the next day to rule out meningitis. I just thought ‘Okay, so they’re just ruling it out, he doesn’t even have the rash, he’s going to be fine.’

“Aub went home to be with the girls and I stayed on a hospital camp bed next to Alex, spending most of the night watching him and listening to the bleep of the monitors. The lumbar puncture showed clearly that Alex had contracted meningitis. We were both numb. The doctor told us that his infection marker was now over 160.

Very sick little boy

“With both of us in shock, Aub made a comment about them telling us a couple of weeks ago it was bad when the marker was 10 and so, by rights, Alex should be dead if it was now so high. The doctor said nothing. They told us that Alex was ‘a very sick little boy’. I soon learned that this is hospital speak for ‘your son might die’.

“We felt completely helpless; all we could do was watch and wait and do all of those things that you’ve heard others do in a crisis just to try to make things better. I went into a state of existence which I call ‘robot mode’. I took everything in my stride, prepared for ward rounds as if I was preparing for a meeting at work and when the consultant brought the hospital chaplain round to see me, I had a nice conversation about everything except Alex being ill!

“Tests showed that Alex had e-coli meningitis which began with a urine infection. After a week and many tests later Alex was responding well and the signs looked much better. Another fortnight later and Alex was well enough to return home. We had made it.

Know how lucky we have been

“We know how lucky we have been. Alex was left with permanent damage to part of one of his kidneys and still has reflux in one area. He also has scarring on his cornea, which is easily corrected by wearing glasses. We go to the Evelina hospital in London to get these checked once a year.

“Alex is a healthy and happy child who loves playing rugby and winding up his sisters. He’s now old enough to understand more about meningitis and knows that the long-term effects could have been much worse.

“Meningitis Now supported me through the Helpline and website. They also provided great help with a fundraising event I held in the office when Alex was much younger – supplying promotional materials, signs and symptoms cards and the local rep from the charity spoke to the staff. It was a brilliant session that was well received.

“I've referred to the info on the website on many occasions which has been invaluable. A couple of years ago when Alex began asking more questions about meningitis, I spoke to the Helpline and they sent me a children’s book which explained meningitis in an age appropriate way. It was great and just what was needed at the time.

“The lasting effects of meningitis are only minor for Alex but are still a reminder of how close we came to losing him. It has made me determined to raise awareness of the different types of meningitis to as many people as possible.

Creating a winning campaign

“I work as a Learning Design Consultant at NatWest and knew that each year the bank runs a campaign to promote their Student Account. I was also aware of the Student ACWY vaccination campaign that Meningitis Now runs and thought there might be an opportunity to work with the charity and combine the two campaigns in some way.

“I made some phone calls and pulled together a team of people, formed of those who are responsible for the creation of the Student Account for NatWest, Mark Hunt the Marketing and Communications Director from the charity and a manager from National Express coaches.

“When a student opens a NatWest Student Account, they receive a free National Express coach card. When they receive their coach card, they will now receive an information sheet giving them all the information they need about how to get the ACWY vaccine and the signs and symptoms of meningitis.

“The first leaflets were sent on 26th June and by October, it’s realistic to expect that between 30,000 and 40,000 leaflets will have been sent to students across the country. When I first had the idea of joining up the campaigns I never imagined that we would be able to reach this many people. Even if only a few people take notice and are vaccinated as a result of the work we’ve done, it’s potentially a few lives that have been saved.

“This has been a huge team effort by a team of people who I had never met before and I’m very grateful to everyone who have given up their time to turn my idea into a reality. Without them it simply wouldn’t have happened.”