Baby with heart on wrong side caught up in hospital turf war
For the 16 weeks of Jack Burke’s life, doctors and bureaucrats have argued about cardiac services at Sydney Children’s Hospital with no resolution in sight. Born with his heart on the right side of his chest, his parents pray nothing goes wrong.
NSW
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When Jack Burke was born with his heart on the wrong side of his chest, his parents never imagined they would be caught up in the ongoing war over cardiac services at Sydney’s two children’s hospitals.
Jack has a rare condition called dextrocardia, meaning his heart is on the right side of his chest rather than the left, a condition that affects only 0.22 per cent of the population.
While not considered dangerous in itself, it is usually associated with other anatomical abnormalities. In Jack’s case he had a “tracheo-oesophageal fistula”, or TOF, where his oesophagus, or food pipe, is not connected to his stomach.
It meant he required surgery just four hours after being born.
In the 16 weeks since he was born, Jack has spent his entire life in intensive care and endured two further long and delicate surgeries at Sydney Children’s Hospital to correct the TOF. And there are many more to come.
Each time, his parents Skye and Kieran Burke have hoped for the best. And each time Jack has come through unscathed.
But their distress has been compounded by the row over cardiac services between Sydney Children’s Hospital at Randwick and Children’s Hospital Westmead.
They fear that if anything goes wrong with their baby’s heart during any of the operations it could result in him having to be transferred to the Children’s Hospital Westmead because cardiac services have been slowly wound down at SCH.
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Doctors at the Children’s Hospital Westmead have openly argued for all paediatric cardiac surgery to be at Westmead, while SCH says it is being “systematically run down” by the board overseeing the two hospitals, known as the Sydney Children’s Hospital Network.
“It’s a massive stress,” Ms Burke said.
“If something happens and he has to be sent to Westmead, what happens if he didn’t make it because it’s so far away from here.
“He has also had three major surgeries here where he could have had a heart issue. Does a baby have to die before they listen.”
Jack was born on May 14 at the Royal Women’s Hospital at Randwick. The couple already knew their baby would have serious issues after his ultrasound.
“We were told he had a blocked bowel and he came out at 36 weeks and his oesophagus and stomach did not join and we were also told he had a hole in his heart,” Ms Burke said.
Thankfully, the hole in his heart closed, but his heart had flipped to the wrong side of his body.
After eight weeks in the neonatal intensive care unit he was transferred next door to SCH.
“He has to have more procedures to open up the airway so he can breathe properly and eat eventually,” Ms Burke said.
“Obviously anytime anyone goes into surgery there is always the opportunity something could go wrong with their heart so the lack of cardiac in this hospital is very scary.
“It blows me away they would even consider taking cardiac away from this hospital.
“We have a long road ahead of us and he has had three major surgeries so far and he could at any point have a heart issue and die.”
The couple’s fear is not unfounded. In July, a critically ill baby had to be transferred from Randwick to Westmead for emergency heart surgery because the only cardiac surgeon at SCH was on leave.
The baby went into cardiac arrest when he arrived at the Children’s Hospital and could have died.
Health Minister Brad Hazzard has said any decision on cardiac services needs to be made by NSW Health.
Secretary of Health Elizabeth Koff told the Health Portfolio Committee on Thursday that there was no timeline on when the issue will be resolved.
Shadow Health Minister Ryan Park criticised the delay and argued both hospitals need cardiac services.
“It’s going on and on, there is no reason to be taking this long,” he said.
“It needs to be resolved.
“We are a large city with a large state, we have two world-class children’s hospital and both should be able to provide this sort of specialist service.”
There are now 46,000 signatures on a petition to keep cardiac services at Randwick.
Sources at Randwick hospital say the delay making a decision was “death by starvation”.
“They know they know it will be an unpopular decision (to shut cardiac at SCH) so they are dragging it out as long as possible so it’s a forgone conclusion,” the source said.