Deborah’s younger son Kieran was just 16 weeks old when he became ill in May 1999. He wouldn’t feed, was arching his back and making a strange cry
When the local hospital didn’t have the facilities to treat him he was transferred to London. Deborah, from Telford in Shropshire, recounts their story here.
“Kieran was 16 weeks old and had been christened on 16 May 1999. The following day I spent with Kieran and his 2-year-old brother Jordan. My best friend Emily was also with us with her daughter Sophie, also aged 2. She was pregnant with Chloe at the time, and everything was fine."
“That night I put Kieran to bed as usual. He woke up in the night, which I thought was for a feed, but he just wouldn't latch on to me, which was strange. He looked very pale and warm and his fontanelle was very slightly raised."
“I changed his nappy but he kept arching his back. I knew something was wrong. It was about 3am in the morning. I called our doctor and she said she would come and see him. Within 20 minutes of the call he became transparent and the cry was horrid."
Straight to hospital
“I called 999 and they came out and took us straight to our local hospital in Crawley. There was a lot in the news at the time about meningitis – Emily and I used to call it the 'M word' because we didn't want to tempt fate."
“The nurse took me straight to the children's ward – it was probably about 6am at this point. I remember I actually said to the nurse in the lift "you just never know with meningitis these days". She stroked his head, which is when I noticed his fontanelle had raised more."
“The next hour was horrendous, like something off the TV with nurses and doctors everywhere. They took him for a lumbar puncture. At the time I didn't know what that was for. They bought him back into his room and he then started fitting, as he had a temperature of 41 degrees. They sedated him and also took over his breathing via a ventilator."
Thought I was going to faint
“They then sat me down and asked me what I thought it could be. I thought he was constipated, hence the arching of the back (I didn't know that was a sign of meningitis). They then hit me with the news that it was meningitis."
“I sat there with my head in my hands and thought I was going to faint. The nurse put her arm around me. I didn't cry, I needed to stay strong for him. The hospital called his dad, who was still at home with Jordan, to break the news. My parents had returned to Shropshire from Sussex after the christening. I called them and they flew straight back down."
“Our local hospital didn't have the facilities for Kieran and had to get him to another hospital, either St Thomas's London or Great Ormond Street. Eventually they got him a bed at St George’s Hospital in Tooting. His dad arrived at the hospital not long after and so did my mum and dad."
“The recovery team from St George’s turned up to change all the equipment over on him. They said there wouldn't be enough room in the ambulance for me, so we had to make our own way. I was due to start back to work after maternity the following day, so had to call work. As you can imagine they were great."
Didn’t recognise him
“We got to St George’s before Kieran and were waiting in PICU. When he turned up, all I could see was his face and I didn't recognise him as he was beyond pale. I had to ask if it was him."
"They then settled him, still sedated. It must have been past lunchtime by now; time was a strange thing through all of this."
“I stayed with Kieran for 24 hours. I remember looking at the clock in his room at 2.10am then closing my eyes. I thought I had fallen asleep for hours but woke up at 2.20am!"
“Just watching him on that ventilator was horrid. I was still breastfeeding and I didn't want to stop, so the hospital gave me a pump and when he was being fed through the tubes it was still with my milk. To be honest I feel this was a massive input into his recovery."
“He had lines coming out of his head, groin and arm; the poor thing looked so, so poorly. The following afternoon the doctor came up to me and confirmed it was meningococcalB. He then said "I can confirm he is doing really well and he will live". I sobbed my heart out. That was the first time I cried. I think something took me over to be strong as normally I cry at anything. But oh my I cried."
“We were told then of the possible after-effects, like brain damage and loss of hearing. He was alive, that was the main thing. Kieran stayed a further day in PICU and then was moved back to our local hospital for a further week with lots of tests."
“He has been beyond lucky to say the least. He has had slight learning difficulties and occasionally a bad temper. We had much help and support from, what was then, The Meningitis Trust, now Meningitis Now, through their Helpline and Family Days, who I can't thank enough for that support they gave me and their fundraising for research into this horrid illness."
“I had some funding from them for extra help with his reading and writing, which was a massive help, and we have over the years donated to pay this back, which I insisted on doing as at the time I couldn't afford the extra tuition. I owe them everything; thank you doesn't seem enough."
“We have to step softly around him sometimes because his temper can be quite bad. Some people say it’s because he's a teenager but it’s been there all his life and I believe it’s from having meningitis.”
"I'd like to thank all of the staff at Crawley, West Sussex Hospital and at St George's, Tooting for their great care."