Knowledge is Power. That has always been my mantra for the entirety of my adult life. From finding out the details of my miscarriage almost forty years ago to determining my current health status, I have always believed that I am am better off if I can make informed decisions rather than groping around in a wilderness of ignorance. However, this knowledge can be a double-edged sword in my quest for the truth. And then there is the bitter sweet realisation that deja vu has surfaced once more.
Nearly thirty-four years ago, Alex was born on a beautiful autumn morning. He was a planned caesarean section as he had been diagnosed with a complex congenital heart defect whilst in utero. Four years previously, Christopher had made his way into the world as a cranky red-haired tiny scrap of a human. He had also been born with a complex heart defect. However, his prematurity and heart condition, along with a metabolic disorder and Noonan's Syndrome proved insurmountable and he made his way back to the universe after forty-eight tumultuous days. Apparently, my odds of having a second baby with a cardiac defect were 3 in 100. Somehow, I had hit the jackpot.
So, my relief was extraordinary when Alex was born pink and roaring. And he lived. His brother Callum was a smidge under two years older, his sister Vanessa who actually named him, was five. Surprisingly, he was my most successful breast feeder and we settled into a happy little routine for his first six weeks.
But, with Alex's cyanosis and restlessness increasing, we were back in the Children's Hospital sooner than planned. He underwent his first surgery to increase blood circulation to his lungs when he was eight weeks old. We understood that he would undergo two more surgeries - both of these open-heart procedures - at the Children's Hospital in Melbourne. As his parents, we were informed of the risks of him being on heart/lung bypass, such as bleeding issues, but these were not given huge priority and we felt safe that if Alex suffered complications, we would be in the right place.
Alex and I, along with my best buddy Tanya (as my support person) flew to Melbourne in September 1992. The operation went very smoothly and Alex turned pink once more. But, he was different. I voiced I thought Alex had had a stroke whilst on bypass. No notes were taken about my concerns and the matter was never discussed, either in Melbourne or when we returned home.
At twenty months, Alex was diagnosed with Developmental Delay and Hyperactivity. This was a nonsense label, which suggested progression to me, just at a slower rate. We returned to Melbourne for his definitive surgery when he was three. By then, he had no language, no play and no relationships. He couldn't dress, feed or toilet himself. I kept pushing for further investigations. The term "Munchausen's By Proxy" disorder was firmly pointed at me. I have never forgotten that hurtful slur.
Eventually, Alex was diagnosed with Autism officially at four years and seven months. We had already started a private Applied Behavioural Analysis home programme and he was responding well. He still had issues with balance, limited body awareness and low muscle tone. We chose for him to left handed because of issues with his right side. All these subtle hints went unnoticed. His 'absence spells' went unexplored as I could always bring him out of them with a snap of my fingers and saying his name. We tried dancing and gymnastics and karate to improve his strength, but his inability to run continued through adolescence into adulthood.
We blamed a mild intellectual disability on his slowness of processing and language difficulties. He needed glasses for sight and specialist orthotics for his feet. He started a gym programme for fitness. He began employment as a Cafe Attendant at Paraquad Industries in Shenton Park, finally finding his niche. Church activities and studies filled his social and intellectual needs and he gained his own unit through the Housing Commission.The NDIA were initially quite helpful with funding some of his therapies and his life appeared bright.
His 'absence spells' began to be noticed at his workplace. I pursued specialist neurological testing through Neurosciences. We waited nine months for that appointment. Then Alex underwent an MRI and the answer that had been staring us in the face for thirty years was finally in the open.
Alex had had a stroke during or after one of his cardiac surgeries. I knew which surgery. The majority of the damage was confined to his frontal lobes, which is a significant language and processing centre. The stroke also explained his right sided weakness and low muscle tone. His intelligence was confirmed as normal. Although he does not have epilepsy, the front lobes' scarring is considered the likely suspect of his absence spells.
This diagnosis changed his life in so many ways. He thinks of himself differently. He is keen to improve his conversation and try "small talk". His diet is becoming very cosmopolitan and he watches how much he eats. He enjoys exercise - walking and swimming at the beach as well as the gym. He is going out to new places with Peter, his support worker. He is being given more responsibility in his workplace. His life is becoming so rich.
Yet, the feeling of deja vu still remains. I do wonder if his skills might have been enhanced by early intervention of a stroke diagnosis. We will never know, but the knowledge that I was right all along is, sometimes, a bitter pill to swallow.
My anger at not being taken seriously has also extended to my life. My abject terror during my miscarriage. The desperation of 'knowing' that my twins were in trouble in utero and being unable to prevent their stillbirth. And then, more recently, my quest to explain the breathlessness that has become the overriding issue since September 2023. Of course, there were hints much earlier. An Ectopic heartbeat diagnosed in my forties. Chest pain that was dismissed as heartburn because I wasn't having a heart attack. A cardiologist who thought I might have a heart defect, but eventually dismissed me as fat, anxious and unfit. Sensations of fluttering and fullness in my throat. Fatigue and bone-sapping weariness.
Over the last fifteen months, I have been fed information in dribs and drabs, here and there. I have met physicians with woeful bedside manners who gave contradictory findings. I had to wait to see Respiratory Specialist Scott Claxton and then Clinical Professor Jenny Deague. Small Airways Disease (SAD) seemed the primary diagnosis, which had probably been triggered by COVID. But what explained the development of my Pulmonary Hypertension?
Last Monday, Michael and I saw Jenny Deague, a cardiologist that had recommended by Scott last September. Unavailable until now, she was worth the wait...
Quite matter-of-factly, Jenny explained that my Atrial Septal Defect (present from birth, which used to be called a "hole in the heart") had caused the Pulmonary Hypertension. What had been clear as mud became extraordinarily coherent in a millisecond. She was so knowledgeable and so caring. All my symptoms could be related back to the congenital heart defect. SAD was just an added complication. Jenny had provided all the answers in one visit. I was so bloody grateful to her.
But, those feelings of deja vu returned. I am sixty three years old. I care for Michael and for Alex. We have an Art Gallery, a home, caravan, two dogs, a cat and a rude parrot. I have been searching for answers for over a year. The diagnosis of a definitive ASD blew me out of the water.
However, I am now ready for the Long Haul. Next on the agenda is an echocardiogram and a holter monitor for twenty-four hours. Perhaps a transaesophogeal ultrasound. And then maybe, closure of this pesky ASD.
I now am aware of my foe. We are not friends. I shall do whatever is required to halt the progress. I have so much living to do. I intend to survive.
