The Hurricane – our fight against Meningococcal B Meningitis
From the moment he entered this world the Hurricane bought with him an energy quite unlike one I’d seen before. He was filthy angry with the entire birthing process, almost growling rather than crying, and when they placed this cranky, grumpy baby in my arms my entire world evolved me. In that embracing moment, he changed me implicitly. I was a mother.
A ravenous hunger, the Hurricane powered through feeding, over taking his birth weight before we even left the hospital. At home, the combination of this hunger along with a drive and determination for movement and activity, even as a newborn, kept us, as new parents, well on our toes! He was, and still is, a solid boy, built like a rugby player ready to strap on his boots but with a genuinely soft side that had everyone falling for his charms.
We as a family were growing and adapting to the pivotal transition into parenthood. Slowly we were navigating and bumping along the path of this journey, hitting all the normal hurdles; crying (not just from the baby), burping, feeding, nappies, sleeping, not sleeping, sleep deprivation, functioning as a normal human on just three hours of sleep…just to name a few. There was, however, nothing, absolutely nothing, that could have prepared us for the hurdle ahead.
We had just visited The Big Mans family in Sydney, the Hurricane was a few days off three months old and it was our first family trip away. On our return flight home to Perth there was a passenger sat along side us with the typical cold and flu, coughing, sniffing, sneezing and I remember The Big Man joking and saying to me that the Hurricane would get sick. Low and behold two days later the Hurricane encountered what we thought to be was his first cold. As new parents, our first thought was to take him to our local doctor, which we did, and after a full check up it was diagnosed that he had a virus. We were advised to take him home and to manage with paracetamol. I was even reassured that because he was on the larger side, that I shouldn’t worry too much if he didn’t take his milk, as he had plenty in reserve. I was satisfied with our doctors advice, by all accounts he looked like he just had a cold, snotty nose, a little irritated and just the general grumbles of a baby feeling unwell.
The next day things started to change. For the most part the Hurricane slept (a concept definitely foreign to him). He would wake for small periods of time, his eyes would be open but he’d be looking past me not completely there. I had been giving him paracetamol for his slight temperature, something I had not yet done as a new parent and so I assumed that the vague expression was a combination of him not feeling well and the medication. I just thought he was resting and trying to sleep through the bug.
That evening he turned from a sleeping prince to something out of my worst nightmares. The Hurricane began to scream. This scream was not your normal infant cry, it was something hauntingly different, a genuine, painful scream. The pitch was high, it entered you and shocked the soul. It is a sound I don’t feel I’ll ever be able to forget. The only calm we could give him was to put him in the bath and for a brief time he would smile and showed us the happy boy we knew and loved. It was in the bath that we noticed three small purple blotches that came up on the skin but strangely enough were gone when he was taken out of the water.
The screaming continued all through the night, he would sleep for only twenty to thirty minute intervals, only to wake and scream again. It was here in the dark hours of the early morning that I hit my lowest point. I say with openness and honesty that I remember being angry with him, angry with him crying, angry that he wouldn’t sleep and angry that I couldn’t do anything to console him. It was a brief moment of selfish, raw emotion but one I will always look back on with regret.
Early the next morning, Good Friday, I fumbled with the Hurricane’s bottle, at this stage he hadn’t drunk any milk in twenty four hours. A miracle moment, he drank maybe twenty millimetres and I thought, thank you, we are turning a corner. The Big Man and I decided it would still be a good idea to go to hospital as we were concerned he was dehydrated. Because he had had a small drink I decided to quickly shower for the first time in twenty four hours. I was in and out in ten minutes. As I gathered a few things together, ready to go, I watched as my husband lifted our boy into his baby capsule and my entire world crumbled away. Our Hurricane began vomiting. When I say vomiting I don’t just mean a small spit up of the tiny drink he had had that morning, the only way to describe it is that the scene unfolding before me was like something out of the ‘Exorcist’. It was projectile and an amount I couldn’t fathom from someone so small that had not eaten in over a full day and night. Our Hurricane, our world, our everything became limp, grey, blotchy and lifeless cradled in The Big Mans arms.
Panic and fear filled my being and we threw him into the car and raced to the hospital. Looking back, I honestly believe the only reason he is still with us today is because it was Good Friday, a public holiday, so the freeway was clear of all morning traffic. Someone was watching over our Hurricane. As The Big Man sped on, I called the hospital to let them know we were coming and explained his symptoms over the phone. Upon arrival at Princess Margaret Children’s Hospital, we were raced through to the emergency department.
I watched, half present, half detached, as the doctors removed his clothes and placed my small, helpless baby on the cold, white bed. He was trying to roll his head and was groaning. They were pointing to his neck and explaining to us that he was stiff and had limited movement. Through the blur and the haze, the urgency came rocketing into reality when we heard the words “we think he has meningitis”. As an early childhood teacher, we are trained to know about meningitis, as when working with small children we need to have an understanding of it in case a child presents with symptoms in class. As a parent, it is an immensely scary word that you know and fear, but think it will never happen to your child. From that moment on everything became very fast and the doctors sprang into action.
Our world, our Hurricane, was wheeled into a private room in the emergency department where we were met by the head of emergency. She was talking but I couldn’t hear her, I was watching my son. The doctors were trying desperately to administer a drip to commence antibiotics but with no success, his little veins had collapsed. Their only option was to put a needle directly into his bone marrow. The gut wrenching agony of seeing this must have been written all over my face and the head doctor, the one I hadn’t been listening too, gently touched my arm and drew my attention back to her. She spoke softly and explained that they were going to perform a lumbar puncture to determine whether it was bacterial or viral meningitis. Over her shoulder, I could see them curling his small body into an arched ball ready to administer the puncture. It was in this moment that again the doctor drew me back into her attention and gently told us that while he will never remember what was about to happen, we will never be able to forget and to go now and make our phone calls to our family, as right now he only had a fifty fifty chance of survival.
As we sat in the cafeteria, I stared blankly at my phone. Make our phone calls? Make our phone calls! How is this even happening? How am I here? It can’t be real, it just can’t be. Not our son, not our child.
The racing thoughts, the panic, the fear, it engulfed me.
I watched as my husband made his first call, his brother. I watched as this man, my man, a strong man, a man that every day puts his body on the line for his career in rugby, weep. All his strength seeping from his body, crumbling and raw. He cried openly and with a wretched broken heart to his family in Sydney.
My family, who normally lived in Perth, for the first time since the Hurricane had been born, were scattered all over the world! Nan, my mum, was on a plane to London to visit my sister, the Speechie, who was living there at the time. My sister, I’ll try her first, no answer. It was late at night in London I realised and moved down the list to Grandad, my dad, living in Singapore. He answered. He listened, but the gravity of the situation didn’t seem to be understood. All I can recall of our conversation was my exasperated scream “there’s a chance he’s going to die”. I now understand that this was my fathers way of coping, to make sense of it for himself, to tell me that all will be fine, but in that moment it was a comfort I couldn’t comprehend.
The phone rings, it’s the Speechie, my sister, my rock, my best friend. She’s had a few drinks, more than a few, she was on a bus after starting a bar crawl with friends. I cry, a hole opens up inside of me and I cry, I scream, I beg, I bargain. My reality hit her like a Mack truck. Even intoxicated, my beautiful Speechie sprang into action, getting a hold of my mum, Nan, in Dubai, and with heightened emotions explain to her that she needed to get back on the plane and come home.
The doctor came to find us and as we walked, shaking and broken back to emergency, with each step I began to hear clearer and clearer the sound of the Hurricane crying. Not the scream, but crying, that normal cry you hear pacing the house at three in the morning willing and rocking your baby to go back to sleep. It was a tiny, shining, glimmer of hope for me.
Sitting in the private office next to the room of our crying son, the doctor explained and braced us for what was ahead. The lumbar puncture had returned cloudy and they were almost certain he had Meningococcal B Meningitis, the blood tests would confirm but until then they would continue treating him with every kind of antibiotic. The fight ahead, she explained, would be like a marathon, while he was showing good signs and responding to antibiotics he had a monumentally long road ahead. He was to be transferred to the Intensive Care Unit and handed over to the head of communicable diseases department.
The ICU. It was quiet, numbingly quiet, with just the gentle drumming and humming ping of the machines. Grey and sterile units surrounding and suffocating. Wires everywhere, wires of importance, of necessity, of alarm. Lonely chairs sat, appearing shockingly small amongst the grey, sterile environment. And there he was, our Hurricane, the fragile connection to it all.
We sat, we watched and we waited. The world slowed and returned to its normal speed. I felt my feet, resting, like concrete, heavy upon the floor. A hand cautiously but with knowing and understanding was gently placed on my shoulder, and I turned to see the comforting face of the Hurricanes nurse. A simple offer of tea and I was wrapped in a warm reassurance of support. It was confirmed, via the blood tests, that yes, the Hurricane had Meningococcal B Meningitis and the treatment would continue.
The hours ticked on and we were confronted by the night. There are beds made available to parents of children in ICU in a private room and we were offered the opportunity to sleep. He would need our strength in the morning. Laying down to sleep I have never felt more fear or more dread to close my eyes. I remember thinking ‘What if he takes a turn for the worse while I sleep? What if we loose him and I missed those last precious hours with him for the selfish need for sleep’. I drifted in and out of fitful dreams waiting at any moment to jump and spring into action. We woke early to the relief that we hadn’t needed to be woken.
As we walked into our sons room, my heart, heavy, hurting, hoping, became full of intense love and gratitude. The Hurricanes nurse, my sons Angel in my heart, had sat holding our baby boy all night, cocooned in her arms. To this day, I’m sure that this one kind action is what saved him. The Hurricane craves contact, the most peaceful and happiest times for him were curled up resting on The Big Mans chest or rocking in my arms. For her to hold him, cuddle him and comfort him through contact, it gave him the sense of love, the feeling of security and ultimately the strength he needed to heal. Gently, we manoeuvred around the wires and she placed him in my arms. For a moment we held each other weeping as one woman and one mother to another. I will forever be grateful to that beautiful Nurse, to all Nurses, what you do and the impact you make is nothing short of a miracle.
Twenty four hours later, Doctors were impressed to see how well the Hurricane had responded to the antibiotics and deemed him stable enough to be moved onto the communicable diseases ward. Here we stayed for another seven days.
With the arrival of the cavalry, our stay there was made easier. First, an extremely disheveled Nan, who after arriving in Dubai only for a few hours had to turn around and come back again, gave me the waiting and knowing strength in the body of a hug that all women need from their own mothers. Being reassured that help was on the way from the east in the form of Nanny Judy, The Big Mans mum, Nan was put back on the plane again to collect the Speechie. Help she did, the arrival of Nanny Judy was not unlike the arrival of Mary Poppins, ready and available with food, love, an extra set of hands and energy to give us opportunities for rest. Grandad arrived next to be by my side, and now with me in a better frame of mind, he could offer up all manner of supportive commentary and be loved for it.
I heard a wonderful phrase once, that it takes a tribe to raise a child, and I believe that to be true. It is the support of the ones around you, that rally you, hold you, prop you up when you need support, and give you the added bit of strength to keep on fighting.
Seven days went by, and with each day, the doctors marvelled at his recovery. We were told that while it doesn’t happen often, they do get miracle cases like ours, those who come so close to death but recover as though nothing has happened.
The swelling and pressure on the brain of an infant can have tremendous long term affects. For six months after, the Hurricane suffered with extreme headaches. Our good friend, and doctor, explained to us in the simplest form to imagine the worst hangover you’ve ever experienced and to multiply it by three. That was what he was living and feeling. As his immune system had been stripped bare, back to nothing, any cold, flu or virus he encountered, he caught.
Skip forward to now, the road to recovery is ongoing. Sleep has been the most difficult part, the headaches that would keep him up at night have now as a toddler progressed to frightening night terrors. Whether a result of what he went through or not, the difficult thing with this disease is that you cannot directly identify what might have been pre existing or post conditions, but the Hurricanes sensitivity to sensory input can be delicate and fragile. Loud noises, bright light stimulation and crowds can be an overwhelming experience for him. His speech too has been slightly delayed in comparison to his cohorts, but I stress that we can’t say whether this is as a result of the disease or just the Hurricane taking his time, the perfectionist that he is.
Unrelated to the meningococcal, our complicated little man also suffers from sleep apnea and has in his short time had both his adenoids and more recently his tonsils removed. Getting everything dramatic out of the way early we say!
The Hurricane is now a thriving three year old, he is obsessed with anything transport related, be it cars, trucks, planes, anything with wheels! He loves to swim, to run, to climb, all things active! He can be stubbornly strong willed but at the same time immensely gentle, caring and affectionate. He is a wonderful big brother to our Little Ray of Sunshine, she thinks he hung the moon.
We have been lucky and incredibly blessed. While we caught the disease in the early stages, we were told in no uncertain terms that had we been half an hour later he would have died. In saying that, had we bought him to the hospital the night before it is likely they still would have sent us home with a virus diagnosis. It changes that quickly. Know the signs and trust your instincts, you know your child better than anyone, and you know when somethings not right with them. Follow that intuition.