Today I’m going to tell you a story, after all, it’s what I do.
Once upon a time there was a married couple with three boys and they wanted to add a baby girl to their family. When she fell pregnant she hung a baby girl’s dress up on her mirror for the duration of her pregnancy and looked at it every day. Opinion is still divided on how well that worked, but at 10.30pm on September 5th 1959 she did give birth to a girl. It was the day of a rugby test between the All Blacks and South Africa and her husband’s contribution to the day was to take the doctor to the test match earlier in the day and they had a few celebratory refreshments afterwards. Consequently the doctor neglected one important task, he didn’t put a stethoscope on the new baby’s heart.
When the baby was six weeks old her mother was concerned because she wasn’t feeding well. After three healthy boys she knew something wasn’t right. Her husband was away on a fishing trip and she took the baby to the GP who had delivered it. The GP sent her on to a specialist and she spent the day at Greenlane hospital. Eventually she was told that the baby had a defective heart and the ability to correct it was beyond medical science at this point, so she should take the baby home and love it. She rang the friend who was fishing with her husband and told him not to pass on the news until they were on their way home. (how attitudes have changed!) Meanwhile, she went home and told her two older sons who were 15 and 12.
The baby was very cyanotic. The hole between the ventricles in her heart meant that her blood was mixing and it was never properly oxygenated. When she cried or exerted herself she turned blue, only on her fingertips and lips, but it was enough for these babies to be called “Blue babies.” To the child it would have felt as though she couldn’t catch a proper breath so matter how she tried. Her mother concentrated on keeping her daughter alive and rested with her on the bed, read to her and eventually taught her to read. The child grew but (believe it or not) was very small. One of her brothers could fit her into the little box on the back of his bike and used to take her for rides around their tennis court. She had one friend, who lived next door, and she was allowed to come over and ‘play.’ The dark-haired ‘sick’ girl was Rose Red and the blonde haired friend was Snow White. Rose Red told Snow White what to do and say, and Snow White did it. Rose Red watched her play.
As she grew, so did the expertise of the doctors. Enter stage right a new, and vital, character in this drama. Dr Brian Barrett-Boyes was a cardiac surgeon with a burning ambition to save children with terminal heart conditions. With his team of dedicated nurses and doctors, he began to experiment with pioneering open heart surgery. The children were put on a cardiopulmonary bypass machine so the heart could be stopped during the surgery. The success rate wasn’t great but it gave hope to the parents of the tiny little girl. Eventually Barrett-Boyes and his team would invent the profound hypothermia and circulatory arrest technique when dealing with neonates with major congenital heart problems, but that was five years away.
In early 1964 the four years and five month old girl developed a cold and couldn’t shake it. The specialists at Greenlane x-rayed her and told her parents that her heart had started to enlarge. If they didn’t operate now it would be too late, intervention would be impossible. Eight operations had been performed so far and one child was still alive.
So on the 19th of February 1964 their precious little girl went under the knife at Greenlane. They were told not to come into the hospital so they stayed at home and worked in their large garden and waited for the phone call. Dr Barrett-Boyes inserted a polyethylene patch the size of a 50 cent piece between the left and right ventricles of the heart to close the hole, he couldn’t do anything to relieve the pulmonary stenosis so he put the tip of his little finger into the valve and waggled it to try and open the stiffened valve and when he opened her up he realised her aorta came out of the wrong arch and went over her heart instead of behind it. The right ventricle was thickened and enlarged but he was hopeful that it would reduce when the hole was closed.
The next day the parents came to see their little girl. She was sitting up in bed with a huge cotton-wool patch over her chest and stitches from just below her throat to her little belly button. Her mother had a new book, about Snowy the white cat and an electric mouse, but when she started to read it out loud the tears flowed. The little girl became impatient and said, “Read it properly, Mummy!”
Their daughter was in hospital for a month and her mother was there every morning when she woke up and every night when she went to sleep. As far as she was concerned her mother lived there. One day the mother had a cold so her Aunt came instead and the little girl was very disappointed and wasn’t very nice to her Aunt. At the end of a month she went home, with no pain medication and no real idea on the part of the medical staff of what would happen next.
What did happen was that the little girl thrived. In 1966 the parents of another child were told that one patient was still alive, a little girl. In early 1967 there was a conference at Greenlane, which was by now a world leading cardiac hospital, and the mother made the little girl a special dress and she stood up on the stage while the doctors discussed her case notes. After the session a young South African doctor came over to speak to the mother and introduced himself. He was interested to find out about how the child was doing and the psychological aspects of post surgery. His name was Dr Christiian Barnard and very soon he would make worldwide history. His first heart transplant patient lived 18 days, his second lived 19 months and his third, 23 years.
The years passed and the little girl grew fitter and stronger. When she was seven she went to school. When other children reacted to her scar she said what her mother had taught her to say, “It’s my zipper. You mean you don’t have one? Poor you.” She had regular check-ups with Dr Jim Lowe, her cardiologist, and when she was thirteen she was told she could start doing physical education at school. That was very confusing to someone who had never been allowed to do anything other than swimming. The doctors had told her mother that because she was so young, she would not suffer any psychological effects from her early childhood experiences. Modern medicine suggests that was wrong.
Years passed and her health continued to be fine. She battled to get fit and had what she later realised was a deep-seated fear of breathlessness upon exertion. She battled with her weight but that was a genetic thing rather than a medical one, although it is common for heart babies to have trouble getting, and staying, fit as adults.
When she was eight the one friend she had with the same medical history, Belinda, died. So she lost the one person who understood the things they talked about.
When she was a teenager she and her mother saw a plastic surgeon about having the scar removed but she was told it would probably make breastfeeding impossible. Goodness knows why. Ironically, she would never breastfeed. When she suffered from chest pain as a result of the chest wall muscles stretching around the scar as she grew, the doctors said, “We thought that might happen, but we weren’t sure.”
In 1984 she won a flying completion and was given a scholarship through to gaining her private pilot’s licence and to clear the medical she had her first echo-cardiogram, after hundreds of ECGs. That day she saw her patch on the screen and the cardiologist told her that many children were not as sick as her and did not survive. In 1991 her father died. In 2005 she went to a young Asian cardiologist and he was concerned about the very loud heart murmur. It was so loud she could hear it at night without a stethoscope. She told him she had always had the sensation of ‘butterflies fluttering’ at her throat, palpitations. He decided there might be a residual hole. It turned out to be pulmonary stenosis. In the six months she waited for a balloon valvotomy her health deteriorated and she became very tired and breathless by mid afternoon. In July 2005 she had a balloon valvotomy, a catheter inserted from her groin which inflated a balloon in the valve and opened it up. Her new cardiologist, Clare O’Donnell, was very pleased with the results and continues to be delighted with her heart health. Recently she has made the acquaintance of another survivor, the man who was the little boy who’s parents were told in 1966 that one little girl was still alive.
The last chapter of the tale was the death of her beloved and devoted mother on Christmas Day last year. She had planned to take her mother, now an invalid after a stroke, away for a couple of days to celebrate today’s milestone. Instead a dear friend is taking her to lunch.
So that is my tale. I am one of the ‘originals’ and today I celebrate fifty years since my ground-breaking operation. All the players are dead, Sir Brian Barrett-Boyes died in 1986, my parents, my GP at the time of my birth, my first cardiologist…I have outlived them all. As a result of their combined dedication, determination, courage and love, I am still here. I write books. That’s what I do with the life they gave me. It is a good life and I am grateful.