Durban - When paediatric nurse Susan Sibiya held her newborn daughter in her arms for the first time, she noticed her baby’s pulse was racing and she was groaning.
She breast fed baby Refilwe who then fell asleep.
“But after 24 hours she wasn’t sleeping quietly. She was making noises and groaning and a colleague came to check and said her heart wasn’t right,” Sibiya said.
“I didn’t know what to do and I came home after eight days. But then after a few days I went to my mom and told her the child was dying because her breathing was shallow and she was turning blue.”
Sibiya admitted Refilwe to hospital where she became the first baby at Dr George Mukhari Hospital, then Ga-Rankuwa Hospital, north of Pretoria, to be diagnosed with a rare congenital heart disorder, truncus arteriosus, caused by the abnormal development of the heart.
“The cardiologist came out at 2am and she didn’t think there was hope, or any doctor, in South Africa who could help the baby as only doctors in America could help,” she said.
“Fortunately, I’m a reader and I had read a book by Dr Chris Barnard and I said ‘I think there is someone who can help my baby in Cape Town’. And I think it gave them a thought.
“I asked my husband to bring a pastor to pray for her and I refused to sign the consent form to withdraw treatment because they said there was no hope. She wasn’t eating, was on drips and was on antibiotics and oxygen.”
Just two weeks later, Sibiya was introduced to now world-renowned cardio- thoracic surgeon Professor Robin Kinsley who comforted her by saying “Don’t worry, I can do the operation, your baby is going to be well”.
Kinsley performed open heart surgery on Refilwe on December 1, 1989, when she was 7 months old, and again when she was 14 years old as the procedure had to be repeated to accommodate growth.
Today, Refilwe is a happy, healthy and successful 29-year-old and just one of the 15000 patients, mainly children, who Kinsley, 77, has performed open-heart surgery on during his 50-year medical career, which far from drawing to a close is now entering a new chapter of life-saving compassion in his home town of Durban.
Refilwe, who knows what it is like to be given a second chance at life, will be the keynote speaker at the launch of the new Children’s Cardiac Foundation of South Africa, which Kinsley has established with eThekwini Hospital and Heart Centre, at the Oyster Box Hotel in uMhlanga tonight.
Kinsley, a Durban High School old boy, started his career working for the state at Charlotte Maxeke Johannesburg Hospital, where he trained as a registrar before specialising in cardiothoracic surgery.
He held his last post as head of the multi-disciplinary paediatric cardiac team at Netcare Sunninghill Hospital in Johannesburg and the Maboneng Heart Institute, a paediatric cardiac transplantation programme at the hospital.
Kinsley has been at the coalface of paediatric cardiology since the field gained momentum in the 1960s and early 1970s when he travelled as a young doctor to the US, to the Mayo Clinic, then a world referral institution for paediatric heart patients.
“The Mayo Clinic was the referral centre for the globe and obviously it was people who could afford it; and the best surgeons in the world were there and they pioneered paediatric cardiac surgery,” Kinsley said.
“When I saw all these children being operated on I thought ‘this is for me’, there was nothing more rewarding to me than to see a struggling cyanotic infant that’s blue being operated on and becoming pink and a normal child - it was really inspiring.”
But two years later in 1973, when Kinsley returned home the reality was that many children died during surgery in the early days because the field was still in its infancy.
“I started developing paediatric cardiac surgery in South Africa but it is important to understand that my life was one where I came up during the evolution of paediatric cardiac surgery. It was a very special period and it only started in the sixties,” Kinsley said.
“Almost every day I encountered something new and necessity became the mother of invention. We had all these different conditions pointed to us and we took major risks, but the biggest was not taking any risk at all.
“The biggest risk was doing nothing and the child would die. And when we took risks we had big successes and, when had successes, it was about fine-tuning.
“When we had failures we went back to the drawing board and thought: how can we do this differently? It was a tough period and very exciting,” Kinsley said.
“Paediatric cardiac surgery is one big emotional roller coaster ride. We had big highs and big lows. When we succeeded the joys were high and great but when we failed there was nothing worse than having to tell a mother their child has not survived. But that has now become rare.”
Kinsley recalled, too, how not infrequently he would tell parents that he had not done a particular procedure before but that he intended trying.
“Very frequently it was successful, and where it wasn’t we would learn how to do it differently. There was a lot of heartache involved, it was a tough 50 years, and when I look back it is extremely rewarding.”
And now that Kinsley has semi-retired and relocated to Durban, he has joined the paediatric centre at Lenmed eThekwini Hospital and Heart Centre, where he plans to continue helping children born with congenital heart defects through the new Children’s Cardiac Foundation of South Africa.
He established the centre in association with the private hospital, to provide life-saving surgery for children whose parents do not have medical aid.
“There are thousands of children in KZN with congenital heart defects who are not being treated. You can’t expect the state to treat them all. It is imperative that a foundation be formed to help these little patients.
“There is a waiting list - it isn’t a waiting list, it’s a death list - of 500 children at Inkosi Albert Luthuli hospital who need surgery, and there are probably another 5000 who don’t even make the list.”
Kinsley said he gave a lecture to the World Society of Cardiothoracic Surgeons in 2012 where he described the tragedy as “continental genocide. The numbers are massive. In Africa, only one in a million children who need surgery get it; and in South Africa, it is one in 10,” he said.
These are the children he hopes to help and has already approached the Health Department as well as global charities to support the foundation.
The patients have been medically evaluated and are now waiting in the public health queue for operations.
“I saw a wonderful opportunity at this time of my life to do something really good. I knew about this waiting list and saw it as something I could get involved in to treat these kids,” he said.
When sufficient finances have been raised and with at least three surgeons on board, Kinsley believes it is theoretically possible to perform 10 operations a week at eThekwini Hospital and Heart Centre - to clear the list in just under a year. But he hopes the foundation’s work will also set a precedent for the rest of the continent, inspiring surgeons as far afield as Nigeria and Ghana to take the concept home to raise funds and treat their own patients.
If he is successful, Kinsley will achieve his dream of being able to watch many more once sickly patients as he says happily, “kicking a football around”, just like baby Refilwe, who has remained in touch with him all these years.
“I have been pretty normal. I have no limitations whatsoever and I have perfectly good health like everyone else,” Refilwe said.
She described Kinsley as “one of the most passionate doctors I have ever known”.
“His passion for saving children who have congenital heart disease is quite amazing. I think it is something he would do even if he wasn’t paid for it. I am inspired by what drives him and how he has taken his profession to another level,” said Refilwe.