fighting meningococcal disease   |   Support, Awareness and Reducing deaths in WA from meningococcal disease

Alex’s Story

ALEX- Even now, nine months later, not a day goes by without me re-living the horror of his illness nor admonishing myself for having not done something sooner to help, or realising how serious the situation was.

Alex was a very special baby from day one, having already suffered one miscarriage and then a threatened one whilst carrying him, our new son evoked feelings of such intense love that overflowed to everyone who knew him. He is the youngest of five children, and from a very young age he developed a wonderfully happy character that endeared him to all the locals in our village and he soon gathered a sizeable fan club. He greeted everybody with such a happy smile that they could not help but feel happy in return.

The week leading up to ‘that’ Friday night in October had seen the family gradually falling prey to the winter’s first bout of flu so, being an experienced mother, I stocked up with Paracetamol and Calpol. Alex had celebrated his first birthday just one month earlier and we were beginning to look forward to his second Christmas with eager anticipation of seeing the wonder of it all in his face that he had been so oblivious to the year before. Alex spent a run-of-the-mill day with me on Friday helping with the housework and going to Sainsbury’s where he smiled at all who passed by. He settled happily to bed at 8pm for, what I expected to be, a usual twelve hour sleep.

We had been in bed ourselves for about ten minutes when, at 11.30pm, Alex cried out from his cot in the next room. I went in to give him a cuddle and he fell straight back to sleep. I had noticed that he felt a little warm and so left his blanket off. However, twenty minutes later he was crying again and this time when I went in I was surprised by how much his temperature appeared to have gone up in such a short time and so I took off his pyjamas and was about to put him back in his cot but changed my mind and took him into bed with us – a decision I shall be thankful for as long as I live.

Terry and I did ponder over whether or not to call the doctor but assumed that Alex was the latest one of us to be going down with flu and that, if no better, we would call the doctor in the morning. I went downstairs to fetch Alex a drink, Calpol and thermometer. The pathetic whimpering of “Mummy, Mummy,” could be heard as I climbed the stairs. I dampened a flannel and even checked my baby care book to see if I had forgotten anything but in my rush to get back to Alex I didn’t bother to read the red section entitled “Emergencies”, it was only flu after all! I took Alex’s temperature but couldn’t read it by the dim night light and opted not to turn on the main light because Alex was not properly awake and it seemed unfair to disturb him. We did try to give him some Calpol but he groaned and objected so much to being moved that even in the half light I could see we hadn’t been successful and so removed his vest and started to sponge him down with the flannel.

An hour later and instinct started to battle with logic, Alex was groaning and didn’t seem to be aware of his surroundings which, on one hand did worry me but, on the other hand, he had always been a good sleeper and had never woken properly when disturbed by teething. I continued to bathe him while Terry dozed but by 4am he was no cooler and starting to have fits. I woke Terry who reminded me that a couple of our other children had suffered from febrile convulsions which can appear more frightening than need be; and I must confess to being an eternal worrier. However, I kept getting a niggling in the back of my mind that Alex was really ill. Yet still I reasoned that I always get upset when any of the children suffer and my imagination runs into overdrive.

Thankfully, I thought, after another hour Alex’s body started to cool down and he appeared to be asleep and I finally started to drift in and out of a half sleep until, shortly after 6.15am, I could feel his body clench and spasm as he started to vomit. He made no sound and remained “asleep” on his front. Had Alex been in his own room I would never have heard him and would have slept on, unaware. I sat up to move Alex and could just make out in the dim light that the vomit looked far too dark to be normal. That did it – panic! I woke Terry and got him to turn on the light so that I could check Alex and call a doctor. Alex had thrown up blood, was deathly white and his eyes were half open; he was in a coma.

I rang the surgery and listened to the taped message telling me which number to call in emergencies and was relieved to hear that it was our own G.P.’s number and not that of a locum. I dialled the number and just managed to tell him who was speaking before I broke down in tears and had to hand the phone to Terry. While we were waiting for the doctor to arrive neither of us touched Alex, we simply stood watching him pretending that it would be best not to disturb him while he was quiet but secretly being afraid of what we might find if we moved him. The doctor arrived and gently set about checking Alex’s back, legs and neck, touching and searching as he went, then he turned Alex over on to his back. The picture that met us will remain vividly in my mind forever. Alex was completely white except for his mouth which, gaping open, was black where he had vomited blood and his lips were blue. His eyelids were open and his eyes were rolled up to the back of his head. A picture, I thought, of death.

Then the doctor asked how long Alex had had the rash which was just developing on his stomach. I immediately felt guilty, a feeling I would soon find second nature. Why had I not seen this coming? Why had I not checked his body? I hadn’t realised that meningitis had been in my mind until I found myself reminding the doctor that Alex had been given the HIb vaccine. I had read the literature at the time and knew that there were other forms of meningitis but still I pushed that to the back of my mind. The doctor gave Alex a shot of penicillin and rang for an ambulance for Alex to be admitted to hospital. He told us that although Alex was obviously very ill he was not sure what the problem was. I later found out that, although having never seen meningitis before personally, he had been fairly certain that’s what was wrong but he hadn’t wanted to worry us in case he was mistaken. He also had not appreciated just how quickly the patient can deteriorate with this disease.

The ambulance arrived very soon and at this time it was still intended that, although Alex needed urgent treatment, it was not a dire emergency and he was to be taken straight to the children’s ward at Guildford hospital about twenty minutes away. We got into the ambulance where the paramedic gave Alex oxygen and monitored him constantly. We were about three minutes into our journey when the paramedic whispered something to the driver then calmly but firmly ordered, “We make as much noise as possible and we wait for no man!” Shivers ran up and down my spine as I fought to control the tears that threatened to overflow down my cheeks. With full sirens blaring and blue lights flashing we arrived in Guildford five minutes later, parking directly behind a staff minibus that was transporting a team of doctors to the hospital. Our driver leapt out of the vehicle saying something to the doctors as he ran round the back to open the doors. Next thing we knew Alex was whisked away from us while someone called, “Into Crash, there’s no output.”

Over the next forty minutes five doctors and three nurses worked flat out to keep Alex alive while we stood like zombies not wanting to get in the way and yet not wanting to leave our son. In all that time I never took my eyes off him and yet I remember very little of what happened except for being grateful that Alex was not aware of what was going on. Eventually a nurse managed to convince us that Alex was stabilised enough for us to leave him for five minutes while we gave her some administration details. She took us across the corridor to a small room that was comfortably yet simply furnished with a small settee, two easy chairs, and a coffee table with a warm glowing lamp on it and a box of tissues next to a telephone. The curtains were drawn shut and my first thought was “this is where they bring you to tell you that your loved one is dying.”

After giving the necessary information to the nurse, the paediatrician came in and explained to us that she suspected Alex of having meningitis and that she was trying to contact St Mary’s hospital in Paddington, London to see if they could take Alex as they are better equipped to deal with babies with meningitis. We rejoined our precious little boy who looked so pitiful lying there, drips coming out of every possible entry point in his tiny frail body. I asked where the Chapel was only to find that it was over the other side of the hospital. I was reluctant to leave Alex for too long and so I stepped out into the ambulance bay. I wanted to shout and scream at God to listen to my prayers, my baby boy who had brought nothing but pleasure and happiness to all around did not deserve this. But I refused to break down, Alex needed me now more than ever and I was determined to be there for him, strong and smiling when he woke up, I was not going to give in without a damn good fight.

Terry poked his head round the door and waved me over. Absolute terror struck, but he had just come to tell me that Alex was to be moved to Intensive Care. The paediatrician came and told us we were in luck, St Mary’s had three beds in their P.I.C.U. (paediatric intensive care unit) two of which were already being used but this left one for Alex. The rapid response team of specialized doctors and nurses were preparing to leave London and would be with us within an hour to transport Alex up to Paddington.

Once in Intensive Care busy work and jostling again took over. Alex had to be put onto a ventilator and life support machine and an anaesthetist and a surgeon came to insert a tube into the main artery in Alex’s neck through to his heart where all the life saving drugs would be administered. Afterwards a nurse told us we could move forward to be near Alex and that we were not to be afraid of the machines or of touching him. But where, where could I touch him? He was surrounded by tubes and monitors. I didn’t want to just touch him; I wanted to pick him up and cradle him in my arms and make him all better. Isn’t that what Mummies do, kiss it all better and make the hurt go away?

By 1pm the team from London arrived and set straight to work changing Alex over to their portable machines and then giving him time to settle back down again before they moved him to the waiting ambulance. The doctor in charge felt that with the seriousness of his condition, Alex needed top priority transport and asked for a police escort to be arranged to take them all the way to Paddington. Bad news came when we found out that there wouldn’t be room in the ambulance for us to travel along as well. Until now Alex had spent his entire life by my side, I had never left him with family, let alone strangers. I felt gutted, I wanted to be with him, I didn’t want to walk away and maybe never see him alive again, I was his mother and I should be with him. I think that having to say goodbye to Alex that afternoon must have been one of the hardest things I have ever had to do.

We decided to leave whilst the team made their final assessments on Alex so that, with luck, we might be there when he arrived. Driving up through London on a busy Saturday afternoon was horrendous. We were only vaguely aware of where to go and were desperately trying to follow map readings when we found ourselves at a standstill in a traffic jam just before Shepherds Bush Green. After five minutes the frustration was becoming unbearable when we heard sirens coming up behind us, then sure enough flying past us went the police cars with ambulance following. I felt like hanging out of the car window and yelling at everyone to get out of the way, our baby was dying and I wanted to be with him.

When we eventually arrived on the ward the news was good, Alex had survived the journey and was finally settled on to all the machinery that would keep him alive for the next few days. We said a quick hello to Alex and were then taken to see Professor Mike Levin who was on duty that day. He told us that Alex had meningococcal septicaemia and explained how the disease worked and what complications could arise if Alex managed to survive the next couple of days. However, the way Alex’s vital signs were at the time he only stood a 50-50 chance of getting through the next 24hours. He informed us that Alex was the most critically ill child in the whole of England. We gave permission for Alex to take part in a new drug trial, both desperate that he should be given every chance possible.

The first hours by his bed were a very nerve wracking experience, the bleeping of the monitors and the drips made us panic every time they sounded for fear of what was happening not to mention the times when the alarm went off because Alex’s heart rate was soaring at 200 beats per minute. We settled ourselves by his bed just watching and praying. I remember feeling times of anger that our special little boy should be going through all this, he didn’t deserve it, he had never done anything but good in his life. We stayed there for hours reluctant to leave him as if somehow just our presence was keeping him alive until finally Professor Levin persuaded us to have a lay down, promising that he would call us if necessary. Within two hours I was back by his side, it had now been a whole day since we first called the doctor and still Alex fought on – a good sign, we were elated!

I find it hard to describe the days of sitting with our baby being kept alive by machines, dedicated doctors and nurses, and the urgings from his family. Several times we were told not to get our hopes up too high, Alex was not out of the woods yet but we refused now to believe that anything would go wrong. Several times his heart raced at such a beat setting the machine’s alarms ringing I was fearful it would just give up. The blood transfusions kept coming and the machines kept bleeping. After an anxious five day wait, the consultant felt that Alex had stabilised and improved enough to be slowly weaned off the ventilator. We prepared ourselves for the moments of finding out if he could survive on his own without the aid of machines. The emotions of that moment when the ventilator was removed were overwhelming; it was like the miracle of birth. We sat in awe and watched as our baby took his first breaths of life, struggling at first but gradually becoming stronger and stronger. Then, a day later, a second miracle occurred, Alex opened his eyes and looked straight at me. All earlier promises that I would be smiling at this time flew out of the window and I cried unashamedly. My son was back with me and as soon as I was allowed, tubes and drips still attached, I was cuddling him on my lap, never wanting to let him go.

Two days later Alex was moved into the general ward away from all the bleeps that had once seemed so frightening and yet had become so reassuring. This brought a new, temporary fear – what if something went wrong and no-one noticed? What if he relapsed and his heart stopped while he wasn’t being watched? But we soon dismissed this feeling when, a couple of days later, we received news that Alex was to be transferred back to Guildford hospital, a step nearer to home! Back at the hospital in Guildford we were placed in an isolation room for a week where Alex could begin his long road to recovery.

Champagne corks popped, five days after returning to the General ward in Guildford, and Alex was discharged from hospital and came home to begin his long recuperation. At the beginning he was like a fledgling bird, unable to do anything for himself not even hold his head up. But he soon became strong enough to sit up and smile at all around him and within weeks he was taking his first steps.

Physically Alex has recovered fairly well, even ahead of schedule. He has a few circulation problems and his heart sometimes struggles to maintain a satisfactory beat. This will need monitoring for quite a few years as it is giving cause for concern to the doctors. He is now mentally alert and chatting well. But emotionally he still has a way to go. He went from previously being a happy confident child to one who was extremely nervy and clingy. He screamed if I so much as walked to the other side of the room, night time and darkness held absolute terror for him. It has taken many months of constant reassurance and patience before I can truly say that Alex is gradually returning to his old self. He still has bad dreams several times a night and his heart problems are still here.

I must admit that every single day I think about what happened and sometimes still cry. I am so grateful to everyone involved for all they did and I appreciate how lucky we are to still have our son today. Many prayers were said in our village when Alex was ill and I thank God for listening.