BEN Higgins tries to explain how he felt when told his unborn son had a major heart condition.
He chokes up and strays from the subject.
Although more than two years have passed, the pain is still clear.
"It was a big shock... that's all I can say."
Ben works in Grafton for an online GPS monitoring company, but recites medical terms like a doctor and heart specialist.
"You have to learn the terminology so you know what the doctors are talking about," he said.
"The more you know, the more you can understand, and the more peace of mind you can get."
His son, Ashley, now 2, is a real little trooper, just like his family.
Ben's wife Tansie was pregnant with her second child and had a routine ultrasound at 18 weeks.
The baby would be a younger sister for Felicity, now 4.
The ultrasound revealed the baby had a serious stomach condition known as duodenal atresia, as well as a heart condition called tetralogy of fallot.
In simple terms, tetralogy of fallot is a condition where there are four abnormalities in the heart.
Ben and Tansie spoke to a specialist and were told there was some chance of a good outcome.
"Surprisingly, the hardest bit is when you find out that there is a problem - then it's just a case of getting on with it, figuring out what to do and looking forward to things being normal again," Ben said.
Due to all the complications throughout the pregnancy, Tansie went into labour six weeks early.
"There were no helicopters, air ambulances or road ambulances available when she went into labour," Ben said.
"Thankfully, the Royal Flying Doctor Service plane happened to be in the area.
"In just 36 minutes they had flown her from the Grafton Airport to Mater Mothers' Hospital in Brisbane," he said.
Baby boy Ashley was born on May 19, 2011. Both pre-birth diagnoses were correct.
He was just 19 hours old when he underwent surgery to correct his stomach condition.
When he was 10 weeks old, he had his first minor heart surgery - a right BT shunt - and at 12 weeks he was able to leave the hospital and return home to South Grafton.
Ashley was nine months old when he had his first major open-heart corrective surgery.
A couple of months later he had a respiratory arrest while at home.
"He stopped breathing just before 1am," Ben explained.
"He then had a cardiac arrest - his heart stopped beating."
Ben and his wife gave their son CPR and were able to revive him just before the ambulance arrived.
He had a second heart repair following this cardiac arrest.
"He's pretty much a normal kid," Ben said. "He's a tough little fella."
Ashley also suffers from a handful of other conditions but should be able to lead a relatively normal life as he grows up.
"So far he's had five operations," Ben said.
Ashley will undergo more surgery in coming years to implement and maintain a valve in his heart, and will require constant check-ups.
After the incredible ordeal the family has experienced over the past few years, Ben has decided to put his hand up for yet another challenge.
On October 20, he'll pedal 100km in the Santos GLNG Brisbane to the Gold Coast Cycle Challenge to raise money for the Heart Foundation.
"I think it's a very important charity to support," he said. "A person suffers from a heart attack every 10 minutes.
"Ashley is my inspiration and motivation."
To donate, go to Ben's page at https://b2gc2013.everydayhero.com/au/ben
- Duodenal atresia
- Tretalogy of fallot
- Soft cleft palate
- Lactose intolerance
- Chronic silent reflux
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