IRON BOY: SURVIVING β-THALASSAEMIA MAJOR by Arthur Bozikas
Where was my wife? I found myself sitting alone in front of the obstetrician, who my wife, Helen, and I had met for the first time only minutes earlier.
But now Helen was gone. After another quick look around the doctor’s plush office, I excused myself and went out to search for her. Surely she wanted to hear what the doctor had to say?
After dismissing her unusual behaviour as a possible toilet dash, I was stunned to find her outside in the carpark next to our car. She was in hysterics, crying and shaking uncontrollably.
‘What’s up sweetheart, are you alright? Is the baby okay?’
‘I’m not going back in there, I’m not!’ Helen screamed through her tears.
‘No, of course not, why? What happened honey?’ I was confused and now very concerned.
‘You know why, you heard him! I’m not terminating our baby!’ Helen burst into tears again.
‘What?’ I said in disbelief. This was news to me. Apparently, I had been more distracted than I’d realised as I had missed the doctor’s words.
It was October 1986, I was twenty-five years old, she was twenty-three and this was our first pregnancy. The sense of achievement of being a husband was still new, and soon I was to be a dad. The very thought was overwhelming and wonderful and scary. It sent me flying high with exhilaration, but then I would remember my medical condition and crash back to earth. The ensuing fear was crushing.
What if our child inherited my condition? Would I be responsible for denying both my wife and our child the chance of a normal life? Panic then manifested inside me, sending my thoughts spiralling out of control. I also now envisioned our baby being born with huge deformities that weren’t even related to my condition.
These misgivings had started the day we’d found out Helen was pregnant. After that, on a daily basis, worst-case scenarios constantly bombarded my mind, exhausting me.
As I’d sat next to her in front of the obstetrician, I’d been assailed yet again by those tumultuous thoughts. Perhaps, if I had reined in my troubled introspection, I would have noticed her leave the room. But overwhelmed by my fears, I was oblivious.
‘Look, I can’t offer you anything else. Hello, your wife needs you!’
‘Sorry, did you say something?’
‘I SAID, your wife needs you!’ The doctor practically shouted while pointing pretentiously over my shoulder toward the door behind me.
It was twelve when I was first told I wouldn’t live past my twenty-fifth birthday. Born with a chronic blood disorder called beta thalassaemia major (Thal), the doctors said my body was unable to produce healthy red blood cells and therefore, I required regular blood transfusions to survive. Since then, it had only been the generosity of wonderful blood donors that had kept me, and others like me, alive. We are known as Thals.
Unfortunately, after so many blood transfusions over the years, all Thals suffer from iron overload and finally succumb to heart and other major organ failures. The doctors said this could happen from childhood through to late teens or, for the lucky ones, the early twenties.
Back then, comic books were still the rage. Batman and Superman were always my favourites but every once in a while, I came across an Iron Man comic and was captivated by the hero’s suit of armour. The stories were okay, but I was fascinated with what Iron Man could do.
So when I was first told I was going to die from iron overload before my mid-twenties, I wasn’t concerned because I truly believed I was Iron Man. At the time, I felt my older Thal friends didn’t know what they were talking about when they said I was going to die because I thought iron made me stronger. I was convinced that I was impenetrable, just like Iron Man. Iron Man saved my life at a time when reality would have destroyed my spirit at the most delicate age in my life.
Now I was twenty-five and soon to be a father. I couldn’t believe that I was there with Helen visiting an obstetrician, knowing I had reached my shelf life. How could I be so irresponsible, so thoughtless, so stupid?
Then I remembered I was in love with the most beautiful woman in the world.
I may not have been normal, but who is? I knew Helen loved me and that’s all I needed to be strong for her and the baby. Then and there, in the doctor’s office, I decided to take on whatever challenges this doctor’s visit brought, good or bad because I knew I could achieve anything in life with her love. It was this epiphany that snapped me out of my introspection and made me notice Helen was missing.
But my nightmares were coming true. With my heart racing, and feeling light-headed, I helped Helen into our car while trying to calm her down with a gentle voice. At the same time, my heart was breaking.
‘What do you mean the doctor had recommended termination of our baby because of my condition?’
‘He said that this baby, being our first, was more likely to have inherited your condition and suggested we should terminate and then try again for a better chance at a healthy baby.’
‘Hey sweetheart stop crying, he’s just an old fart who is stuck in the past. Let’s get a second opinion, from another obstetrician. Don’t worry about what he said.’ But nothing I could say could pacify either of us.
He made this vile and monstrous diagnosis at our very first consultation without taking a blood test from either of us, without consulting with any specialists and without even examining Helen. A doctor’s profession is called ‘practising medicine’ but that advice was unprofessional and unfounded. This advice, from a senior doctor with his experience, a specialist in his field, is something no one would have expected to hear.
Already struggling with a heavy heart regarding my mortality, my worst nightmares were coming true. How was I going to remain strong for Helen?
The above excerpt is taken from the prologue of Austalian-born Arthur Bozikas‘ latest book “Iron Boy“, an autobiography about his lifelong experience with β-thalassaemia major.
A heart-breaking, honest story about Arthur’s fightback from his darkness to extraordinary heights that will leave you to read more. Most of all his will to survive, then prosper against all odds, will inspire and leave you wanting to read more. To date, Arthur has survived over 8,600 needle sticks, 700 blood transfusions, and 2,200 donated blood packs to stay alive and still counting.