Rhys' story

19th March 2021

Emma and Justin were visiting family in London when their baby son Rhys first became ill. As they headed home to Wales meningitis never entered their heads, but as Rhys continued to deteriorate Emma became increasingly concerned about his condition

Rhys bacterial pneumococcal meningitis case study

Then, a quick-thinking doctor arranged for Rhys to be admitted to hospital – a phone call that Emma and Justin believe saved his life. They tell their story here.

“Back in May 2002, myself and Justin had very much been looking forward to spending a weekend in London visiting my sister with our 7-month bundle of joy. Rhys was always such a happy, healthy and easy-going baby, but on the Saturday afternoon we were a bit concerned as he just did not appear to be himself and did not want to eat much at all. Indeed, that specific night, I can recall little sleep, as Rhys was sick a couple of times and was crying sporadically, so I just kept him close and watched him like a hawk as any mum would.

“The following day, we decided to visit the local hospital since Rhys did not look well and we needed a medical expert’s opinion. After waiting anxiously for several hours, Rhys was quickly examined and we were informed that he had flu and to keep giving him Calpol to bring his temperature down. 

“Following our visit, we decided to head back home earlier than anticipated, as we both felt that being at home would be the best solution. The journey back home seemed to take forever and I remember that Rhys was sick again in the car. 

“However, even at that stage, I never for a minute thought it could be something sinister, or deadly. Meningitis never even entered our heads since he had no rash and the visit to hospital had temporarily put our minds at rest. In fact, on the Sunday afternoon and early evening, Rhys even seemed to be a little bit better but he was still sleeping quite a bit. 

Surprisingly, he seemed to have improved further 

“Since both myself and Justin are teachers, my dad routinely came to our house Monday morning to look after Rhys, as, surprisingly, he seemed to have improved further and had had a more comfortable night. However, I can recall ringing home several times to find out how Rhys was doing and, each time, Dad informed me that he was still off his food (he always loved his food!) and had been sleeping for most of the day. That was when I decided I needed to get home as soon as possible, as I was beginning to feel quite panicked inside and just wanted to be near him. 

“Ten minutes later, when Dad opened the door to me, holding Rhys in his arms, panic really started to set in. Rhys was quite pale in colour, but it was the manner in which he could not focus on me properly when he opened his eyes that made me sprint for the phone. I remember saying to Dad that I thought he was seriously ill. 

“Speaking to the receptionist at our local doctor’s practice, I tried to remain as calm as possible, but, looking back, I was probably far from it! When a doctor, passing through reception at that moment, spoke to me and I explained Rhys’s symptoms he told me to come down immediately. 

Believe phone call saved his life

“Whilst being looked at, Rhys projectile vomited in the medical room and did not want to be held. Following this, the doctor quickly made a phone call – I honestly believe this phone call saved Rhys’s life! Unbeknown to myself and my dad, he had phoned Llandough Hospital, Cardiff, and had told them his concerns and to expect Rhys’s arrival shortly.

“Whilst en route to the hospital, I was frantically trying to get hold of Justin but he, as a PE teacher, had a sports fixture, so I could not speak to him. I left an urgent message for him to phone me as soon as possible. 

“Circling around the hospital car park attempting to find a space, I finally told Dad to drop me off outside the Paediatric unit as I knew Rhys was seriously ill at this stage. As I reached the external door, about to press the button, to my horror I looked down at Rhys and he was violently fitting in his car seat. I recall screaming, “Please, somebody help me!” whilst pressing the buzzer, and, with that, I could see several people racing down the internal corridor to meet me. 

“With Rhys still fitting, they ran with him towards a medical room, whilst a kind nurse comforted me and led me gently to a nearby room. At this point, I was hysterical and finding it difficult to comprehend what had just happened. 

“When Dad finally joined me, and I explained what had happened, he comforted me and held me tightly but I could tell he was terrified too. As I slowly walked in to see Rhys several minutes later, my legs almost gave way as I hardly recognised him. There were tubes everywhere and so many medical staff were working on him. 

So tiny and fragile

“I remember he looked so tiny and fragile lying on the medical bed and I was so desperate to hold him but, obviously, I couldn’t. Finally, Rhys began to stop fitting. Justin arrived shortly after, and the three of us just sat in silence for a while. Again, I remember how supportive the medical staff were with us and we were just so grateful for their presence and help. 

“Lumbar puncture. Meningitis. Viral. Bacterial. The words terrified me. They still do! Even writing this now, I am in tears. It was at this stage that we finally realised how serious a condition Rhys could have and we felt so helpless as parents. The doctor informed us that a lumbar puncture was needed and that it would be extremely difficult for us, as parents, to observe, so the doctor thought it would be best if my dad went with him. Of course, as a devoted grandfather, he immediately agreed, so Justin and I were left being comforted by some of the medical team and were just trying to make sense of the situation. Numerous questions raced around our heads. 

“When we finally received the devastating diagnosis, pneumococcal meningitis, our lives were turned upside down. We were informed of the severity of the illness and it absolutely terrified us. 

“The medical team decided that Rhys would benefit by being placed in an induced coma, and he spent nearly a week looking as if he was just sleeping. This is how I tried to deal with the trauma of the situation since that week remains a bit of a blur. My parents were ever-present on a daily basis and became our ‘rocks’. 

Turned to look and smiled at us both

“Towards the latter part of the week, I can clearly remember being told that they were going to lessen his dosage to see how his body would react. When Rhys slightly turned to look at me and his nan, and smiled at us both, we just cried tears of joy – he could hear us and he knew we were there. 

“However, the medical team felt that, after a week, he did not appear to be improving as much as they had anticipated, so the decision was made to transfer him to the nearby University Hospital of Wales (Heath) where there was a specialist team. 

“The hospital became our home for the next four weeks. Each day, four medical experts would discuss Rhys’s case by his bedside using terminology that we simply could not decipher. However, we knew they were doing everything to fight for our beloved baby son. Sometimes I would desperately ask, "Is he going to survive?" but they simply could not make that guarantee, which I can completely comprehend now. 

“Over the next week, Rhys was brought out of the coma and we spent every waking hour by his side. On my darker days, Justin would tell me that Rhys was not on the ICU ward, which did comfort me slightly. 

Knew something was drastically wrong

“However, when Rhys started twitching suddenly one day, I instinctively knew something was drastically wrong (mother’s intuition) and immediately called for medical assistance. Rhys quickly started violently fitting and the alarms sounded. The medical team tried desperately, but they could not bring him out of his fit. As a result, he was taken onto the ICU ward – my world fell apart. Myself and Justin took it in turns to stay by Rhys’ bedside at night, since we were lucky enough to stay in the hospital’s amazing facility for parents of children who are seriously ill. 

“Miraculously, Rhys spent several days in the ICU before he was able to move back to a general ward since he seemed to be making small improvements. However, I became acutely aware of not taking this aspect for granted as things could change so quickly. Whilst in hospital, I remember that I prayed every night. 

“Since Rhys was requiring so much treatment, and blood was being taken so regularly, the doctors decided that it would be best if Rhys had a Hickman line put in since they were finding it so difficult to find a vein and he was becoming so distressed. As a family, we watched every minute on the clock until he was safely back in recovery. However, by having the procedure, it meant that Rhys now felt no pain whilst giving blood on a daily basis. 

Sitting up and smiling at the medical team

“Over the next two weeks, we began to see some light at the end of the tunnel since Rhys was now beginning to sit up in bed smiling at the medical team, and we could see our cheeky baby boy slowly returning. However, I still dared not think that we were completely out of the woods just yet. 

“As a normal procedure, following a meningitis diagnosis, Rhys had to have a hearing test which he failed. There were no tears – after the nightmare of the past month, we were all just so grateful that he was still alive and with us! However, the following week, Rhys seemed to change for the better and appeared to be able to react to noises and he duly passed the second hearing test. It was thought that the medication might have intervened with his earlier prognosis. 

“We were ecstatic, especially when we were informed that Rhys could now go home and be brought in daily for his treatment since we lived so close to the hospital. This was the moment that we dared believe that he had made a miracle recovery.

“Even now, 18 years later and reflecting on our experience, we can remember everything as if it happened yesterday. The trauma never goes away, but we realise, as a family, that we are the lucky ones since Rhys went on to make a full recovery and we are forever indebted to the amazing medical team that looked after him. 

“Today, Rhys is a healthy, sociable, 19-year-old, who is in his first year at Bath University studying a BSc in Sports Management and Coaching. To us, as a family, he is our walking miracle.”

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