Meningitis in your words

Dylan O'Neill's story

  • Location: England
  • Categories: Meningococcal
  • Age: Baby 0-1
  • Relationship: Parent
  • Outcome: Full recovery
Dylan O'Neill

Dylan Keith O’Neill was born a month early (on 30th January 2008) at 8lb 5oz in Antrim Area Hospital and was a healthy boy apart from jaundice and was a slow sucker. His brother Ben was two and a half when Dylan was born and from the outset protected and loved his younger brother. Both boys were in creche as I worked full-time.

Our problems started around November 2008 when Dylan started having temperatures, but was breaking teeth at the same time. We would give him Calpol, bath and monitor him. My mum took him to the doctor and the usual checks were done i.e. ears, throat, chest, and nothing was wrong. He usually returned to his old self and would get teeth, so we put the problems down to that.

On the 11th December we were up through the night with him and his temperature was 40 degrees.  We bathed him and gave him Calpol and he fell asleep. He woke at 6am and we gave him a bottle of milk. He was sick, and in the morning my mum and I took him in for the earliest appointment possible. The checks were all done again and our GP (who had seen us at least three times over the past few weeks) said nothing was wrong.  She almost seemed bored with us, as if we were hypochondriacs. By this stage Dylan was very dull and clingy.

"I’ll never forget the terror in Dylan’s eyes"

We came back out to our village and mum went in to the shop. Dylan had been sleeping in the car but woke crying uncontrollably. I went in the shop carrying him and had him next to my chest. One of the shopgirls commented that he didn’t look well and queried if he had a small rash. With him lying in to me I hadn’t seen it and it definitely wasn’t on him when the doctor had examined him some 20 minutes earlier. There was a fine rash.

There was measles going around the creche and, although all the signs were there for meningitis, somehow you don’t think these things will happen to you and I didn’t think for a minute that was what it was.

We got another appointment with the doctor. She told us it definitely wasn’t meningitis, measles or chickenpox. I asked what it was and she told us a virus. Dylan was sick again in her surgery and was a bad colour and very lethargic.

Looking back it was all so clear, but as people have said to me, if your GP couldn’t spot it, why would you?

I told her I wasn’t happy with Dylan’s condition and took him to Antrim Hospital. My mum and I drove him to hospital calmly thinking it wasn’t meningitis but concerned about him.

When we went through the check-in at A&E he was sick again. We were in the process of getting the wet clothes off him when we were ushered in quickly. We laid him on the bed and by now he was a very bad colour. My mum didn’t tell me until that evening, but she thought he was passing away. I was still in a confused state of knowing that my son was ill but never believing it was this deadly disease.

The doctor examined him and said she’d like to get another doctor. Another came in and then like lightning there were 20 people round us. I was screaming ‘what’s going on?’ and stating ‘at least it’s not meningitis, my GP told us’.  However the doctor told us she was sorry but they were treating him for it and he was gravely ill.

I’ll never forget the terror in Dylan’s eyes. He was only 10 months old – stripped to his nappy and a sea of faces around him.

It felt like a scene from Casualty and I felt like I wasn’t inside my own body – like I was watching all this chaos but feeling like I wasn’t really there. 

My mum and myself were asked if we’d leave for a while and go to the visitors’ room, as the next minutes were crucial. I walked the corridors in tears, trying to get hold of my partner Mal, and all around me were Christmas decorations and trees. I couldn’t bear the thought of losing my baby.

All our family came up in severe shock and all we could do was wait.

"All we could do was kiss him and will him to make it. I never prayed so much in all my life."

The doctors sedated Dylan.  I was glad that at least he didn’t know what was happening.

I had to go to the phone to speak to environmental health and go through details of Dylan’s creche and get antibiotics for everyone who had been in contact with him.

We were told we had to wait on a bed at the Royal Victoria Children’s Hospital in Belfast, but may have to travel 150 miles to Dublin if we couldn’t get the intensive care bed.

Dylan was connected to so many wires. I went in to him and so did his dad. All we could do was kiss him and will him to make it. I never prayed so much in all my life.

Eventually the nurse came and told us they’d secured the bed in the RVH in Belfast and that Dylan was stable. I couldn’t travel with him as they needed room for a doctor and two nurses to transfer him.

Myself, Mal, my dad and my brother travelled up the M2 and two police motorcyclists escorted Dylan’s ambulance up past us. I was sure he’d taken a turn for the worse, as they were going pretty fast.

I was convinced if he did make it, he’d have to lose a limb or something. I’d heard so many horror stories about meningitis, and my uncle’s grand-daughter had died with the condition.

My partner stayed very optimistic; he was sure Dylan had got through the worst of it and that he’d make it.

We arrived at the RVH at 3pm and were asked to meet the consultant. Dylan was sedated and connected to monitors and machines. The consultant said Dylan had transferred well and if he kept in the same stable condition for the next 24 hours, he’d put him at the better end of recovery.

I’d never, ever felt so relived in all my life, but still we knew we had to wait and hope.

Hanging around the intensive care unit was an eye-opener into the amazing work the doctors and nurses do every day in their care for very sick children. A small boy of three died from a brain tumour whilst Dylan was in intensive care. How do people get over these things?

I walked the corridors looking at video footage and photos I had of him on my phone, crying and praying and talking to family and friends on the phone. Everyone was so good. The churches in our local community said prayers for him and the messages of support from people we didn’t even know were amazing.

Around 5pm the nurse gave us an update that she’d taken Dylan off sedation to see if his brain had been affected. She laughed and said: “He was fighting to get the wires pulled out, I think we’ll have bother trying to handle that boy.” It was confirmed his brain was fine.

By 9pm the nurse told me to come to Dylan’s room, as she had a surprise for me.  He was off all monitors and all wires were gone, except for the drip. The rash was definitely fading.  Babies go downhill very quickly when they are ill, but they bounce back quickly too.

He cried when we saw us – he was terrified but was going to be OK.  

The next day he got out of intensive care and into isolation where he stayed for three days and then got transferred back down to Antrim Area Hospital for another three days. He was very sick and had to get IV antibiotics for the duration of his stay in hospital, but we got him home a week before Christmas and he was the big present that year for us.

It wasn’t until after Christmas we had it confirmed that Dylan had in fact had meningococcal septicaemia. 

Since then he’s developed into a loving, boisterous toddler and has passed all his checks for hearing and development. I worry he’ll have problems with learning in the future but so far, so good and we are very grateful to the doctors and nurses from both hospitals for their care of Dylan.

I’ve joined Meningitis Research Foundation as a member and in May this year we held a charity night and were able to raise £3,550 for the Foundation.

Meningitis is a very scary, deadly disease but with the help of the Foundation, maybe some day their goal will be achieved of having a world free of meningitis.

Ruth Kidd
October 2010