What I learnt from losing my first child

I believe that every moment in life steers you in a particular direction, irrespective of how insignificant it may seem. Some moments rollup into an event that we may remember for many years to come. It may even change the way we perceive ourselves and the world around us. The recollection of which, either brings us joy, haunts us forever, or a combination of both.

There are many events that have shaped the person that I am, but one that has been so impactful that it has altered my very being. Elements of myself which were once familiar to those close to me, have become unrecognisable. My altered essence is clearly visible in photographs which previously captured unburdened eyes but now is a testament to the bitterness of what has been lost to me forever.

This life-altering event begins with immense pride, boundless joy, and unparalleled hope for the future. It is one that alerts me to my naivety and false sense of security. The feeling that I was untouchable, a father brimming with pride over my legacy and a hope that a piece of me might remain long after my life on this earth is done.

A child is so much more than an addition to one’s family or an expression of one’s wealth. That child is an extension of yourself. A reflection, as if you were to sneak a glimpse into the pure waters of a nearby lake. A well of limitless potential and a saviour of the future.

He had been with us for two and half blissful months. I was working and trying to reignite the engine that made me a successful IT professional. This time, the task was more difficult as I could not keep my newborn son and my lovely wife out of my mind.

It was a common occurrence for my wife to call me during my workday. I looked forward to hearing her doting stories and milestones that I was missing out on. This time was different. There was a hint of panic in her voice. Something was not right. I immediately downplayed her concerns, having had way too much time off from work. I thought that it was normal for babies to get the odd illness as their immune systems kick-in. She challenged me. Mother’s instinct they say, and she urged me to return home.

Eventually, I gave in to her pleas. On arriving, I was met with relief yet still an aura of panic blanketed our home. I ventured towards my son to make my own assessment of his health. His forehead was warm to touch but, more alarming, was that his skin had lost so much of its rich hazelnut brown colour. Action had to be taken and quick. We drove to the hospital and called his paediatrician. She was a formidable woman, who was small in stature but forceful and strict in demeanour. Coming to our aid in no time at all, she prescribed a course of intravenous antibiotics. I exhaled a sigh of relief which was a long slow breath that I had been holding in since my own panic had taken hold of me. Our highly competent doctor put our minds at ease, explaining this to be a common occurrence among children our boy’s age.

“Lunch”, I whispered to my wife. We departed for some sandwiches and coffee. Getting the sustenance that we needed, we returned to our little boy and waited in anticipation of taking him home. We were met with concerned eyes. The mighty and self-confident woman we had come to know and trust, seemed frazzled. She reassured us and communicated that his condition was not at the level she expected it to be. Still, we had the utmost faith in our super paediatrician. She was not going to let him out of her sight without him reaching one hundred percent, and so we waited a little more. I reassured my wife, that just as with all the tough times we had been through, we would look back at this as another that we would survive. I was completely right, but I was not aware, at the time, just how significant the word “survive” would become in our context.

Soon we were invited for coffee by our medical professional. As we sat down, my body registered an all too familiar stress response. It dawned on me that this was no random coffee catchup. Something dire was about to be said. The words that she uttered left me with a massive weight on my shoulders. She explained that our bundle of joy was to be transferred to the Intensive Care Unit. Panic and confusion coursed through me, but still I remained hopeful. She was one of the best paediatricians in the country and she was going to work out what he needed to regain his health. She left our presence swiftly and purposely strode towards the life that she was about to save.

More hours passed. Our hearts pounded in our chests and sweat droplets formed on our foreheads in a comfortable airconditioned environment. “What torture is this?”, I thought. For the first time in my life, I was helpless, there were no words of reassurance I could offer my distraught wife. We only wanted to have him back in our arms so that we could usher him safely back to our home. Tears started flowing down my wife’s face as she knew as well as I did that intensive care was for serious medical problems. “What was our son, a healthy baby boy, doing there?”, we questioned ourselves.

Night began to fall when we were met by our defeated doctor. I could tell that she had depleted all options that were in her power. Her recommendation was to transfer our son to Sunninghill hospital which boasted paediatric heart surgeons that were the best in their fields. The only question that was put to me was “Can you afford this?” As far as I was concerned, this was not a factor for consideration at all. All I wanted was to cradle him in my arms again as I did, for the very first time after he was born.

Without any hesitation, we were following the ambulance which transported my son to the medical team that was going to save his life. I had hope in my heart, and I was on a mission. We stepped into the hospital and I frantically requested information on the whereabouts of my son at reception. All I was greeted with were mounds of disclaimers and surety documentation to fill out which could result in becoming overindebted to the medical facility. I searched deep within myself to keep my composure and get the documentation out of the way. I was, subsequently greeted by a family member who ushered me to the paediatrics wing of the hospital. As I walked along those walls looking at the pictures of smiling children, I could not help but wonder, “Would my son be smiling at me when all this is over?”

After a bit of waiting, our heartbreak extended towards another pair of worried parents. Neither of us knew what was going to be the outcome for our respective children, but I stood resolute in the hope that my son was going to pull through. Although I had not realised it, it was now the dawn of a new day. We were advised to go home and get some rest. It would be safe to say that we did so begrudgingly. It was impossible to sleep, my eyes were affixed on his empty cot and I sat in meditative trance until we decided enough time had passed to return to the hospital. We returned to a team of doctors that were huddled together like a football team working out its next play.

Finally, we were greeted by the Paediatric Cardiologist who seemed to be upbeat and bubbly. This instilled hope in my wife and I as it seemed that the situation was recoverable. Unfortunately, this was the furthest from the truth. The picture that the Cardiologist had painted of what was going on inside this little body was shocking and horrifying. I began to fade back into that meditative trance which suddenly broke when I heard him coin my son’s condition as Heterotaxia. We were in complete disbelief that our seemingly healthy and happy little champion had so much wrong in his little body. My heart broke as I struggled to come to terms with how he may have been suffering unbeknownst to us. I had a near perfect score in Biology in my senior year of secondary education and completely realised the severity of my son’s condition. I slouched into a pile of meat in the chair I was sitting in. “No more hope”, was the first thought that came into my mind. “We are going to lose him!”, was the second. The immeasurable pain that followed was by far the most excruciating I had ever felt in my life. It started from deep within my belly and rose towards my chest. My body tightened and breath ceased. I could hold back no longer. From this crouched position, I grabbed my wife, and we began our sorrowful journey together.

A surgery was proposed to improve the circulation of blood into his little heart. I did not see the point as it had been articulated to my wife and I that there was no chance of survival. We were given some space to think it over. I had many useless arguments with family members over the surgery. In my mind, even if we were granted the miracle of him surviving, what would his life be like? Would it be hell on earth for him to live with so much wrong in his physiology? I escaped away from the supportive group of family and friends, finding a quiet corner with which to gather my thoughts. Being a religious person, I begged God to take my life in place of his or to somehow trade places between us. Knowing the impossibility of what I was asking, I stopped. Closing my eyes, my mind searched for a solution as it normally does. There was no solution to this problem, and it was completely out of my control. Despite how badly I wanted my son to survive and lead a normal life, there was nothing in my power nor was there any viable possibility of this happening. I came to the realisation, that no matter how hard it was to accept, this was the only outcome that was possible.

I collected myself and, with my wife by my side, discussed the surgery with the surgeon. The conclusion was that the surgery would improve the quality of life for what little time our champion had left. We agreed to go ahead with the surgery with the new information we had received. Such a difficult surgery had proved unsuccessful, resulting in the inevitable death of my once happy and playful son. My wife and I cradled him in our arms as we did so many times before. This time it was to say goodbye.

I am not sure if there is a moral to this story. I know that I am not alone in my experience of losing my child. I know that an integral part of life and growth is suffering. None of this knowledge can fill the void in me that was once occupied by my son. The one true insight that I have gathered is that I remained hopeful to the very end. This hope was not to serve me or my wife. It was the vehicle fueled by the love for my son and it ultimately served him. For I was with him at the time he needed me the most. I was with him at the beginning of his journey, and I was with him at his end. That is all that matters.



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Martial Devotee

Martial Devotee

A family man and Martial Artist on a journey of self-improvement and self-discovery.