GROWING UP WITH A CONGENITAL HEART DEFECT

I was born on September 5 1961, in Auckland, New Zealand and weighing 6lb 2 oz. I am still small being only 4 foot 11 inches tall and weighing around 42kgs. I wear a tiny size two shoe. My parents were told that I was a healthy baby girl, but as the days went by, my mother was concerned that when I cried I turned blue, but was reassured by the medical staff that I was fine, and my blue skin was a sign of a healthy baby. (Oh Yeah?). My parents took me home and did all the right things, but were still concerned at the blueness and that I wasnít thriving. It was the plunket nurse who suggested that I might have a heart problem.

I was about ten months old when I was admitted to Green Lane. The childrenís ward was at the back in the old army huts that had been built for the American soldiers during WW2. Wards 7, 8, and 9 as we know them today didnít exist back then. After undergoing a series of tests, including ECGs, chest x rays, and a catheter, I was diagnosed with "Tetralogy of Fallot with Pulmonary Atresia". My cardiologist in those days, told mum and dad to take me home and love me, as there was nothing they could do for me, and I probably wouldnít see my second birthday.

Mum wrote away to Heart Units in Canada and the USA, but received replies telling her that the team at Green Lane were the best in the world, and they couldn't offer me anything that Green Lane couldn't. I saw my second birthday, and my third..... at four years of age, I underwent another catheter, to see if any surgery was possible, but no.

Life continued. I started school at the age of 5 in 1966, when we still had milk in schools. I went part time to begin with, and as I got so out of breath walking to the classroom, my dear, now late, dad had to carry me there. At 12 years of age, I began having fits, and spent sometime in the now new Ward 9 being checked. It was thought by the medical profession that I had Junvenile Epilepsy, but following an EEG at Auckland Hospital (in those days they glued the wires onto my scalp and it took several months to get the glue out of my hair. Nowadays it is a simple painless procedure), they discovered that I had had a stroke which has left me slightly weak on one side and affected my eyesight badly. I wear glasses now.

I was a Brownie, learnt the piano, went to speech and drama school and learnt ballroom dancing, where I won lots of medals and danced in the "Ballroom Princess" competitions at the Peter Pan. I went to Baradene College for my High School years, and left after gaining school certificate. I got a job as a Librarian, but didn't like it too much, so went nursing which was a challenge for me.

I was nursing in a private hospital when I made my first overseas trips, just to Australia for my holidays. In 1988 I went to the USA by myself, staying one week in Los Angeles, visiting Disneyland, Knotts Berry Farm etc. I then traveled onto Florida where I stayed with relations for a month, returning via Honolulu, which I loved. I felt really proud of myself, as I only needed oxygen on the last leg of my journey, from Honolulu to Auckland. I returned to my nursing, then began to get very tired, and the fits came back again.

I was flatting by myself at this stage, and in 1991, an aunt found me unconscious in my lounge. I was rushed to Coronary Care at Auckland Hospital, underwent more tests and was referred back to Green Lane, where they decided to fit me with a pacemaker. The fits had turned out to be complete heart block which explained me going unconscious. What a difference the pacemaker made. I felt a new person, but by this stage, my nursing became too exhausting, and I was granted an Invalids Benefit. Life was good for a while, apart from the usual bouts of bronchitis and chest infections etc.

In 1997, I really did it!!!!! I caught a virus and went down hill. I ended up in Ward 8 at Green Lane with severe congestive heart failure. In fact it almost cost me my life, that was until Doctor Coverdale used an experimental diurectic (water pill), that shifted the fluid from my heart and lungs that had been slowly drowning me. I lost 12kgs in fluid weight. I gave up my home and came and lived with my mother and step father in 1998. My life had changed again. I find that I am unable to do as much as I used to before the heart failure episode in 1997, without getting too breathless. I need to have home oxygen to make things a little easier. Still, I try and lead as near to normal life as possible.

My greatest hobby is my computer and the internet. I love books especially about NZ during the old days. I collect first day stamp covers, and like music, mainly the old stuff like Glen Miller, Vera Lynn, Dean Martin, Frank Sinatra etc. I am unable to have children of my own, so I am very proud of my younger brothers two little ones, my three year old niece Brittany and six week old nephew Karl. I was never able to play any sport, but I am a wonderful enthusiastic spectator of the Auckland Blues team, our All Blacks, The Auckland Warriors and our NZ Black Caps Cricket team.

I have now become involved in an internet group for adults with congenital heart defects, and have met three other ladies that are ACHDs like me, in NZ through the net.We are now hoping to get a support group together for adults with CHDs here in NZ.

I am now too old for any of the surgeries offered to the young ones of today with my defect. The pressure within my lungs has a lot to do with it too, but then who knows what is around the corner in the next few years.

Thank you to my wonderful cardiologists Arthur Coverdale, Louise Calder, John Neutze and Trevor Agnew for looking after me throughout my 37 years and keeping me alive and happy. Having a congenital heart defect is a challenge, but I am sure it also makes us strong willed with a lot of faith and determination to make our way in the world.