When Casey Court and Sam Jewell were in their mothers’ wombs, doctors gave them little chance of survival. The two young Territorians had been diagnosed with a deadly, rare disease – Hypoplastic Left Heart Syndrome. The left side of their hearts were poorly formed and could not support the main circulation. Only 12 Australian babies were diagnosed with the condition last year. But the young Darwin boys have beaten the odds and are alive and well today.
Casey’s mother Trudy Court, of Berry Springs, said: “Watching him go through this, it’s something you wouldn’t wish on your worst enemy. But he is a fighter – a miracle.” Casey, now six months, has lived through two major heart operations, three heart attacks, several respiratory arrests and the first six weeks of his life were spent on life support. At 20 weeks old doctors said he would only live five days. “It was pretty heartbreaking but we didn’t give up because the syndrome varies in severity.”
Mrs Court’s husband Michael and her mother went searching for answers and found them through the hypoplastic organisation, Hearts of Hope. Mrs Court said the group’s website informed them how the open heart surgery necessary to save Casey’s life could be performed in Australia through the Medicare system. This made all the difference because the Courts, like the Jewell family of Jingili, believed the operation had to be performed in the US and were not sure how they were going to raise the money for surgery.
Mrs Court left for Melbourne a week before Casey was born. He was transferred to the new born emergency unit and operated on at six days old. “They can’t tell how bad it is until the baby is born and Casey was a bit worse than others. He had a lot of problems after the first shunt operation.” The operation took seven hours and with the stress they could not close his chest afterwards because of the swelling. “His chest was covered with plastic film and you could see his heart beating. They kept saying there was no hope… he suffered three cardiac arrests and there were times the doctors said it would be easier to switch him off than put him through it.”
A second operation was performed because the first shunt caused complications and after that Casey improved greatly. “I kept waiting for something to happen but he has never got sick again.” Mrs Court said.
Sam Jewell, 18 months, was diagnosed with the syndrome at 24 weeks and doctors told the family to be grateful for the few days they would have with him. But the Jewells also did not give up. Mum Deanne Jewell said: “Sam was born in Darwin and the doctors said he had a 65 per cent survival rate.” The family flew to Melbourne and at five days old Sam had open heart surgery. He arrested once 12 hours after surgery and then “breezed through”.
Both mothers praise the work of Melbourne doctor Christian Brizzard who operated on their sons and saved their lives. Both Sam and Casey are now fine.