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Hayden's story

28th March 2016

Carrie, from Bromsgrove in Worcestershire, has relived the worst time of her life, when her son Hayden was battling for his life against meningitis, to support the call to widen the use of the MenB vaccine. Fortunately, Hayden pulled through. Carrie tells their story here

Hayden's story

“Boxing Day 2007. My 4-month-old son, Hayden, became run down with a cold.

He had a runny nose and, although generally a happy baby, became a little grumpy and under the weather.

“This continued for a week and then he gradually became more unwell. He was a big boy who loved his milk, but suddenly he wasn't interested. He started running a fever and was sleeping more than usual.

“Being a very concerned first time mum I took him to an out of hours surgery on the Saturday. We saw a doctor who informed us he had an ear and throat infection and to continue giving paracetamol and ibuprofen.

“By the Sunday he became very lethargic and would only be held by myself or my partner. I noticed that if he was moved he would whimper and he was still not very interested in his milk.

Fontanelle raised

“We called out of hours again and began preparing to take him. Beforehand I noticed his fontanelle was slightly raised but I didn't think too much about it at the time. My mother who was there began googling things (as you do) and mentioned meningitis to me. I replied ‘don't be so silly!’

“Arriving at the out of hours we were seen by a doctor, when Hayden started to perk up and look around in his car seat. He informed us he wanted us to go straight to the children's A and E department in Birmingham where we would be seen straight away.

“I panicked and became worried as to why he had sent us when my baby seemed to be perking up again.

“We were seen straight away upon arriving, where they stripped Hayden down to his nappy. A doctor who was examining him began to circle the tiniest of pin prick dots on his legs. I hadn't even noticed these at home.

‘This cannot be good’

“We were told they wanted to get antibiotics into him straight away and would chat to us in the family room shortly. Waiting in the room my mind was spinning. ‘This only happens on tv ... why are we here? This cannot be good.’

“A doctor informed us they were treating Hayden for meningitis. I was in shock. Never in a million years did I expect that. They commenced IV antibiotics and he was admitted. On day two he had a lumbar puncture, which I could not witness. The thought of my baby being in pain was heart-breaking. The lumbar puncture confirmed cellular meningitis.

“By day three they noted his head circumference had increased slightly and a CT scan was performed, which confirmed early evidence of hydrocephalus (abnormal accumulation of fluid in the brain). By day four I felt he was getting better and the antibiotics were fighting this dreaded disease.

“Then on day five he fitted on me. His left side started twitching and his eyes began looking upwards and he became unresponsive to me. I was distraught and screamed for help and the room filled with doctors and nurses while I watched my baby boy be attended to by what felt like a million people.

“He was then started on an oral anti-fit medication and was sent for another CT scan. This showed a basal ganglia infarct. The consultant who sat us down to tell us the news explained that there was a 60% chance Hayden would not be like other children. Part of his brain was damaged.

My world collapsed

“My world collapsed. My poor baby was suffering and there was nothing we could do. He did explain that because he was so young that part of the brain could ‘reconnect and heal itself’ and we prayed this would be the case. By day seven he had two more brief seizures and was admitted to HDU. These were controlled. The next day he suffered a prolonged seizure which they struggled to control. This was heart-wrenching.

“I couldn't believe all of this was caused by this horrific disease. He began improving and finally we were discharged home on the 16th January. He had to be kept on phenytoin (antifit) medication for eight months and received physiotherapy for a slight left sided hemi-paresis which resolved.

“Gradually reducing the medication to nil was a very anxious time for us fearing he may fit again, but he never did. By 14 months of age he was reviewed by the consultant who discharged his care completely. Hayden was a happy healthy toddler who was developing normally. By the age of 2 he could speak well and count to one to ten in four different languages.

“Even now at 8 years of age he is so happy, developing as he should and very bright at school. His short-term memory is sometimes very bad and I do wonder if that is caused by the meningitis, but his long-term memory is far better than mine!”

So grateful for my miracle baby

“Reliving the worst time of my life, I am so grateful that I have my miracle baby still with me. If we had kept him home that one Sunday night I would never have noticed the rash and I am 100% sure he wouldn't be with us today.

“As the years have gone on I look at him and realise how lucky we are as more and more devastation appears to be taking other people's lives. We now have another son of nine months, who is lucky enough to have had two of the three Men B vaccine doses. I would have paid privately for this had it not been offered on the NHS, without a doubt.

Meningitis Now supported me emotionally to get over the trauma and devastation of having to deal with a baby with meningitis in the fresh moments after.”