I WAS born in 1976 with a congenital heart defect (CHD). I was the colour blue when I was born, so it was immediately apparent that something was wrong. I had a transposition of the great vessels which meant my aorta and pulmonary artery were reversed. This was obviously not a good thing.
Back in those days, there were no scans to detect abnormalities in the heart, but there have been incredible advances in technology since. Within days of my birth, I had to undergo an operation called a “baffle procedure” which involved putting a hole between the chambers of my heart to allow blood and oxygen to flow around my body.
When I was two years old, I was sent to the Royal Brompton Hospital in London for what is known as a “Mustard procedure”. This involved switching my aorta and pulmonary artery around.
I attended Our Lady’s Children’s Hospital in Crumlin until the age of 16 when I graduated, so to speak, to the Mater Hospital, where all of us with congenital heart defects go after that age.
When I was young, I took part in pretty much everything I could and had a relatively normal childhood even though I had a heart condition. I was a big football fan and could keep up with the other kids playing football or going around on our bikes. If the other kids were operating at 100 per cent, I was at about 85-90 per cent.
I had my eyes set on a glorious footballing career, but that did not manifest into anything more than a couple of training sessions. When I was 13, I had an angiogram to assess the damage to my heart and the doctor who carried it out said football and rugby were now out of the question, and he told me to concentrate on golf and chess, neither of which I have mastered. It was frustrating when I started to slow down while my friends were all still active, but I still cycle at my own pace and swim.
Academically, I have been quite fortunate and never found any great problems, apart from during the Leaving Cert and when I was cramming for exams in third level I would get pretty exhausted. Overall, I had no real issue with the heart when I was going to school.
After school, I studied marketing and language at the then Tallaght RTC and then did a wonderful course in TV and radio production at Liberties College, which I really loved.
I worked in radio for about six years in Dublin City Anna Livia FM and Lite FM Q102, doing research, production and presenting. I found it really interesting and would love to get back into that area.
My last job was as facilities manager in a large office block in Dublin city centre where I looked after health and safety, fire safety, basic maintenance, security and so on for a number of years. I’m job hunting at the moment.
I still enjoy a social drink and think being able to enjoy life and go out to socialise with friends is very important. I am quite vigilant about my diet, especially salt, which is a big no-no for anybody with a heart problem, along with large amounts of alcohol and fried foods.
Last year, I had to have an Implantable Cardioverter-defibrillator (ICD) implanted which was a major procedure. The ICD is programmed to detect cardiac arrhythmia and correct it by delivering a jolt of electricity to the heart. I was so young when I had the last major procedure that I don’t remember it, but I found the ICD procedure very tough. Overall, I’m in reasonably good health at the moment and am feeling pretty good.
This is my third year as chairman of Heart Children Ireland (HCI) and that work keeps me very busy. I think it’s very important for anybody who has gone through the system and experienced the wonderful care you get in Crumlin and the Mater to give something back, and this is my way of doing just that.
When I was born with a heart condition, there was no support group for my parents to turn to and it’s great that parents nowadays have the support of HCI. Many parents who feel so isolated when their child is first diagnosed find it very comforting to speak to other parents who have gone through or are going through a similar experience.
We also have a group called Cairde Mo Chroí for survivors of CHD over the age of 16 where we can meet up and discuss issues among ourselves.
A lot of practicalities kick in when you hit your late teens and early 20s, such as trying to get car insurance and difficulties getting a mortgage, and we can compare experiences.
For an organisation that is very small in terms of the number of staff, Heart Children Ireland really does so much for patients and their families all around the State and I’m so happy to be able to contribute towards this work.
What is a congenital heart defect?
Congenital means inborn or existing at birth. A congenital heart defect occurs when the heart or blood vessels near the heart don't develop normally before birth.
Congenital cardiovascular defects are present in about 1 per cent of live births and are the most frequent congenital malformations in newborns. In Ireland, there are about 500-600 babies born every year with a congenital heart defect.
In most cases, the cause of these defects are not known. Sometimes a viral infection, such as German measles, can cause serious problems and heredity can also play a role in congenital cardiovascular disease. Certain conditions affecting multiple organs, such as Down syndrome, can involve the heart, too. Some prescription drugs and over-the-counter medicines, as well as alcohol and street drugs, may increase the risk of having a baby with a heart defect.
Heart Children Ireland was founded in 1990 by a group of parents who met in Our Lady's Hospital in Crumlin while their children were being treated for congenital heart defects.
Their mission is to support children who suffer from congenital heart defects and their parents and families. They also try to support bereaved families whose children have died from CHD.
Heart Children Ireland now has more than 800 member families and has raised in excess of €1 million for the cardiac unit in Crumlin and for services in the Mater Hospital. For information, tel: 1850-217017 or log on to www.heartchildren.ie.
