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Yves d’Udekem operates on the tiniest patients. Some babies are only a few days old when they have open heart surgery, the first of a number of operations they will undergo before having a procedure known as the Fontan bypass at four or five years of age.
The level of precision required is high so it’s unsurprising Yves considers “super-sophisticated technician” and “artisan” are part of his job description.
The Belgian-born surgeon, researcher and self-confessed adrenalin junkie who has lived in Australia since 2003 leads an internationally-renowned research project known as the Fontan Registry.
Australia and New Zealand are now recognised as world-leaders in paediatric heart surgery, largely because of the research efforts of cardiac surgeon Yves d’Udekem.
The Registry, established in 2008, has about 1,500 Australian and New Zealand patients on its database who underwent a Fontan operation in the first few years of life. It is expected to double in size over the next 15 years.
“It is the largest database of its kind in the world,” says Yves. “Despite the fact we are a small population, we have a larger database than North America.”
The life-saving Fontan surgery is performed on children with abnormal hearts which cannot effectively pump blood to the body and lungs through two separate chambers.
After the operation, which redirects blood to the lungs by bypassing the heart, the patients have a ‘functional single ventricle’. This single heart chamber pumps blood with oxygen around the body, while blood – without oxygen – is pumped into the lungs directly via the veins.
While most of these children will live a relatively normal existence well into adulthood, the fear their hearts will suddenly stop is the dark cloud shadowing their lives.
The Registry is giving these patients hope. It has provided more accurate predictions of life expectancy and information to analyse the best medications and management strategies.
Using the large pool of patients, Yves is investigating whether warfarin or aspirin is a more effective blood-thinner. Fontan patients are placed on these drugs after the operation to reduce the risk of blood clots forming. Warfarin has many side effects; aspirin is more benign, so patients are keen for evidence backing the best medicine.
Drugs to lower blood pressure are also prescribed to patients because it is perceived that having a Fontan is akin to heart failure. Yves says there is no evidence for this and his research seeks to clarify the best treatments for patients.
An unexpected but welcome outcome of the registry has been the strong ties forged between Fontan patients, Yves adds.
An active Facebook page and a patient interest group has been established. The registry has given Fontan patients a voice and they are taking control of their condition and care.
“They come up with stuff we did not expect,” says Yves. “They have health issues we had no idea about.”
No one knew that leg cramps and migraines were so prolific among Fontan patients. The symptoms weren’t described in any textbook or research study but it was a common complaint on the Facebook page and reiterated at regular educational days held for Fontan registry patients, as Yves discovered.
It made sense. Fontan patients have a low amount of blood circulating in their muscles and Murdoch Children's researchers proved this was the cause behind the leg cramps. The high pressure of blood coursing through the veins – at a rate of 15 to 20 millimetres of mercury instead of the standard zero to five millimetres – might be behind the persistent migraines.
Using the Fontan Registry, Yves and his co-researchers are investigating the impact of these higher vein pressures on the liver and kidneys. The benefits of exercise for Fontan patients, the longevity of patients who may ultimately need a heart transplant and the risks surrounding pregnancy for women who have undergone the operation are also under the microscope.
Yves expects 70,000 to 100,000 people will ultimately benefit from the research underway at the Institute.
“The fact we are more in contact with patients means we can improve what they really need. It’s not only about giving them a life, it’s also about patient satisfaction and the pleasure of being alive.”
Outside the operating theatre and when he’s not buried in research, Yves likes to live on the edge – literally. Ice climbing was one of his favourite sports until he decided it didn’t go hand-in-hand with married life. Cave-diving was similarly abandoned when his five children came along and living dangerously was outweighed by the responsibility of parenting.
But it’s the same adrenalin he says drives him in the operating theatre. Whilst he feels more reassured about the job as he grows older, he can still be stricken by panic or fear but it’s a motivator rather than inhibitor.
His love of the outdoors, perhaps combined with the high-pressure environment of heart surgery, drives him to occasionally take some much-needed time out.
“From time to time I need to escape the city and go and build a camp fire in the wild. And the rest of the world stops.”
Recently, he’s taken up surfing and windsurfing. And he hasn’t given up on cave diving completely.
“I will go back into it,” he smiles. “I’m crazy about it.”