Ethan Brown is busy proving the brightest medical minds wrong, and is happy to share his life story if it can help others.
He’s already beaten the odds and on outward appearance is an ordinary eight-year-old boy. It’s his medical history that is extraordinary.
Ethan was born with eight separate heart defects, none of which were diagnosed until he went to the doctor aged three for a bout of tonsillitis and a heart murmur was discovered.
Groundbreaking open-heart surgery at age five corrected some of the problems but the electrical impulses of the heart failed and he faced a second surgery days later to insert a pacemaker, which he now relies on to keep his heart beating.
Ethan and his parents Glenda and Chris shared their story at the 10th annual Making a Difference Gala Ball at Ballarat Mercure last month to help raise funds for the hospital that saved his life.
Within days of the heart murmur being discovered, the Browns were in the cardiac ward of RCH learning a heartbreaking diagnosis.
“They said to us that there’s too much wrong, they can’t fix it and he won’t make adulthood,” Ms Brown said.
“It was devastating. They said go away and enjoy what time you have with him because … if we start fixing things it will be like a chain reaction.”
His arteries were attached to the wrong pumping chambers of the heart, he had blockages above and below the valves in his arteries and multiple holes through the inside of his heart meaning blood was travelling through his heart the wrong way and his blood oxygen levels were low.
Less than two years later Ethan’s heart was failing and doctors attempted a revolutionary new surgery that was the equivalent of three procedures in one. It took 16 hours.
READ MORE:Making a difference
“It was the longest day of our lives and it was successful … but unfortunately with success came complications,” Ms Brown said.
“He got complete heart block, which means the heart’s electrical currents don’t work, so he went back in for a second open heart surgery to have a pacemaker fitted which is what keeps his heart contracting.”
Another surgery will be required in about two years to replace the pacemaker.
“Down the track it’s very likely he will end up having a heart transplant but they don’t like to do them so young because of all the rejection drugs and they don’t last so long.”
In the meantime he’s getting on with life, having found a passion for basketball and all the usual interests of a grade three boy.
“He does have some restrictions and when he gets sick he gets very sick,” Ms Brown said.
“He can’t regulate his body temperature and his immune system is quite low … so even a normal cold can put him in hospital.”
Ethan is a student at Alfredton Primary School where Making a Difference Gala Ball founder Alicia MacLean is a teacher.
Ms MacLean started the ball after a friend died in 2007 following two cardiac arrests. She wanted to do something in his honour and to help others, so in 2008 the first Making a Difference Gala Ball was held to raise money for the Royal Children’s Hospital where her friend had spent much of his childhood.
The 2018 ball at Mercure Ballarat last month raised more than $80,000.
Ms MacLean knew Ethan’s story would touch the attendees and asked the Browns if they would be the “stars” of the night.
“Ethan’s at an age now where he understands about giving back. We’ve taught him that he had a really tough go of it, and still does, and because he wants to help he was really happy to be part of it,” Ms Brown said.
READ MORE: Miracle saves Ethan
Another fundraiser is also underway to raise $5000 to sponsor a bed in Ethan’s name in the RCH’s cardiology ward.
Ms Brown said Ethan would get a kick from having his name permanently on a bed – not just written there when he’s a patient.
“He will love it, he will adore having his name there and it will be nice to have a tribute down there for something positive,” she said.
Click here to donate to Ethan’s bed appeal.