Nisha is from New Zealand.
I was born in the small city of Gisborne, NZ in 1977. Mum went in to labour two weeks early and went to the hospital. The doctor told her that it was too early and to go home. As I was mum’s fourth child and the longest labour she had was less than 2 hours, she demanded to stay. The doctor gave in and told her she could stay but he was going on a fishing for the weekend at lunchtime so if the baby had not born by then, she would have to go home. As mum went in to full labour the nurse went to find the doctor, when she returned and checked how things were going, she screamed and ran out to find the doctor. Mum had no idea what was going on, she knew her baby had been born, but did not know I was blue and that is why the nurse ran out.
It took the doctors a few days to figure out there might be something wrong with my heart, and when I was about a week old, mum and I were put on a public flight to Auckland to go to Greenlane hospital.
Once at Greenlane I had a Balloon Septostomy which help open a hole in the heart, which was already there. I returned to Gisborne Hospital and was allowed to go home for a few hours at a time, but stayed in hospital until I was ready to go back to Auckland for my Mustard Repair. When I was seven months I was due to have a mustard repair. Due to a knee infection, this was put off a month, so in July 1978, at 8 months old, Sir Brian Barratt-Boyce performed by surgery.
I recovered really well. While I was in hospital, many of the babies where getting the flu and other illnesses, but I was not. The nurses could not understand this as we were all in the same ward. After talking to my mum, they found at that she was washing all the toys she gave me in hot soapy water before and after I played with them, thus not sharing the same germs with other children. This practice of washing toys was soon brought in to the hospital. One-day mum saw the nurse about to give me my dose of morphine. She noticed there was a lot more in the syringe than last time and questioned the amount. The nurse said ‘no 25mls that is right’ – mum made her check it again, it was meant to be 2.5mls. By being alert and speaking up, she saved my life that day. The practice of having two nurses/doctors checking drug amounts in the hospital soon started, and this is now a worldwide practice today.
I recovered and was allowed to go home. The doctors told mum and dad that they did not know many children over 10 years with TGA, so don’t be surprised if I don’t live that long. I had a check up every 3 months as a baby but now I only have a check up every 2 years. Each time I get told ‘nothing to worry about, see you next time’.
Growing up I always knew about my TGA (Transposition of the Great Arteries) and sport was always an issue. I wanted to fit in so would go in the running races, ride my bike, horse riding, swimming, play netball and hockey. After the school cross-country the day before I turned 6, I was so exhausted, I spent two days vomiting and sleeping. I was just too much for my body. In Grade 6 I had to leave school camp early, again I was not well. Playing netball and hockey was good, but the school always understood and I was in goal, thus less running around. If I failed to eat enough, or try and fit too much into one day, I would become very faint and ill very quickly.
When I fell pregnant when I was 25, the heart specialist said that it would be a great risk, and she would recommend that I did not try to carry the child. If I did, be ready to loose it at any time if it became too much of a strain on my heart. I took the risk, and on the 25 May 2003 I had a very healthy baby girl. She was born two months early, which meant my heart had not started to move to make room for her, and a week later at my heart check up I was 5kg lighter than before I feel pregnant. In fact from a few days after falling pregnant till when Mikaila was born, I had never felt better. I was glowing, had lots on energy, and over all felt very healthy.
Today I am 32 years old, as yet do not have a pacemaker, and it has never been talked that I need one by my doctor. I do get tired very quickly, and there are times when my body will just crash at the end of long day and I fall asleep very quickly. I do have chest pain, a few times a week, but I have been told not to worry about it. I get palpations most days as well, and often wake up with them. Even though I live in QLD Australia, my toenails are blue most of the time, and in winter, people often freak out at my blue lips. But I guess I am used to it, so it does not worry me.
I don’t let my TGA stop me from living life, but I make sure I take my time, and know the risks. I am not a fan of rock climbing, bush walking, or anything that is high energy, which is good as I find these tasks hard. I do enjoy Wii fit, and swimming laps, which means I can stop if I feel tired.
I work full time as a high school teacher, and am a single mum, so am very busy. I have worked on a ship, so was able to get my ships medical, and I love to travel.
For the mums and dads with heart kids, as they grow up I ask you remember they have risks, but they need to learn their own limits and need to be free to do so.
Wrote by Nisha Van Wyk
Nisha Van Wyk gave CHD-UK permission to use the photographs on this page.