Marj's story

Marjorie Doyle was born with a complex form of congenital heart disease. At 68, she is one of the oldest adult survivors with the condition, narrowly escaping death several times. Now she wants to give back and help others. This is her story, in her own words.

I was born in the hot summer of 1955 in Brisbane, a human scrap of life, clinging on with a flawed heart. I had a condition called tetralogy of Fallot (TOF) - a congenital heart defect that features four main problems, including a hole between the lower chambers.

It was commonly referred to as "blue baby" back then, because babies with TOF often have blue skin due to low oxygen levels. During the era I was born, many other children with heart defects did not survive long enough to receive the heart surgery which may have prolonged their lives.

Yet here I am at age 68. I have survived and thrived, perhaps against many odds.

Mum was very scared because she thought I was dead. Eventually, I made a noise.

However, my parents had no idea I had congenital heart disease (CHD) at that stage. There were no ultrasounds then. And for some reason, it wasn’t even picked up when they checked my heartbeat.

Mum said I was a very listless baby. Apparently, all I did was lie in my cot for the first 18 months. I hardly moved. Then they started doing tests and chest X-rays and they discovered I had TOF when I was six months old.

I was a sick child. I could not keep up with my older siblings and was frequently absent from school. My mum was overprotective. She kept me home a lot as she was so worried about me. Fortunately, I did not know how sick I was.

On more than one occasion I nearly died. Twice I contracted pneumonia and landed in the children’s hospital.

I was supposed to have my first repair surgery done when I was eight, but I kept getting tonsilitis, so they had to put it off. Then, apparently, the hospital lost my files. There were no computers then.

My best friend had been walking beside me and she told me to stay put as she ran to get my mother.

A repair operation was now a matter of urgency. The doctor pronounced that without surgery I would be an invalid at 16 and I would never see my 30^th birthday.

On the day of my surgery, which lasted 6.5 hours, I was not aware there was a good chance I would not survive. Nobody told me. I am so thankful they did not. Children are natural born optimists. They expect to live. I expected to live.

But in fact, I barely made it. The doctor told mum that I had nearly died twice during the procedure. But mum only told me once I reached adulthood. I also thought the surgery had ‘fixed’ me. I was sent home and told I was well.

I remember being tired a lot in my 20s and I thought, "Surely this can’t be normal?". I always felt behind everyone with my energy. But I pushed myself. If only I had known. I would have lived more carefully. Perhaps I would have made some different decisions along the way.

I managed to keep up with my education despite how much school I missed. In those days, doctors questioned my mother about my progress at school. They sometimes expected a child born with TOF to have mental delays or disabilities. Fortunately, I had none of those.

I got into university and went on to be employed by Queensland Health in the area of Aboriginal and Torres Strait Islander health and mental health. I loved my job as a welfare officer and obtained postgraduate degrees. I am a proud First Nations person myself.

I loved advocating for patients, particularly those in a minority group who often lacked a voice due to disadvantage or for other reasons. I think, as a survivor, we look for ways to give back. I think we do it almost unconsciously. I want to be useful. I want to give back.

Since retirement I have also written a book, a work of short stories about other Aboriginal and Torres Strait Islander peoples. These are real stories, embroidered slightly in a fictional style. Some were of my family and I thought these stories needed telling.

Even then, I was in so much denial and put it down to getting older.

But recently, after seeing a cardiologist and suffering a slow heart rhythm for many years, I received a pacemaker. It has helped a lot.

As has been explained to me, my heart is not normal and never will be: “You haven’t been given a new heart. Don’t think you’re bulletproof.” So, I try to be more careful these days. I still need regular monitoring, and see a wonderful specialist, Dr Nicolae, once a year.

I now hope to help future generations in some way and to tell parents that a diagnosis is not the end of the road, but in most cases, the beginning.

I want to help other families affected by CHD. Giving back has always been my intention. And I have a vested interest in all the research being done at organisations like the Heart Research Institute.

I want to be tapped into all the new treatments.

I want to tell TOF parents it’s possible to live a long and fulfilling life. The long-term survival rates for people who've had TOF surgery continue to improve.

I met one mum who had a little boy with TOF about 10 years ago and it was the most wonderful experience. She had tears in her eyes as I shared my story. I knew, at that moment, she had hope for her little boy’s future and knew he would be OK.

Back when I was a child, there were no support groups for people like me with CHD, or for our parents. My mother wouldn’t even have dared to ask questions to the doctor when I was diagnosed, especially as a minority.

My mental health can be a bit fragile, and I can get very anxious at times. I need to be careful and put physical limits on myself now.

But I still have a lot of living to do. When each new day arrives, I welcome the dawn, glad to be alive. So many adventures are waiting to unfold.

Against many odds I have survived, and maybe the best is yet to be.

Marj's book, 'Florence Falls', is available here on Amazon.