Like most typical three-year-old boys, Mihalis Marios loves Thomas the Tank engine, running around and making noise.
But what sets him apart is something he hasn’t got – the left side of his heart.
He gets tired a little easier than his peers, needs to rest while running and has trouble regulating his temperature but unlike other children with hypoplastic right heart syndrome he doesn’t appear blue and can lead a relatively normal life.
But half a heart is only half of his story: Mihalis’ complex and rare medical condition also means he lacks a spleen, has two right lungs, two right kidneys, a midline liver and his bowel formed around the wrong way.
Mihalis had his first major open heart surgery at just five days old, and a second and third at 3 ½ months old to replumb the two chambers of his heart, and his malformed arteries, to do the work of the four chambers that a healthy heart has.
Complications with his second surgery at 3 ½ months old led to a emergency surgery to open up a narrow artery and the battling baby was placed on ECMO, a machine that takes over the function of the heart, to allow his damaged heart to rest.
“He was on ECMO for 4 ½ days and we didn’t know if he would come off it or not. They didn’t actually know what the cause of the issue, so the ECMO stabilised him to give his heart time to rest,” said mum Michelle Marios.
The surgery for hypoplastic right heart syndrome is a three step surgery and Mihalis faces another major surgery in about 12 months.
The first inkling that something was wrong with their son came at mum Michelle’s 20 week ultrasound. Over the next days and weeks various experts diagnosed various complex congenital heart conditions and the Marios’ were forced to relocate to Melbourne so their son could be born in a specialist hospital to give him the best chance of survival.
“When he was born we were told to expect him to be completely blue, to need intubation, and to be whisked off to NICU straight away,” Ms Marios said. That was on September 20, 2014.
But after his birth it became apparent there was also something was wrong with his organs and a diagnoses of right atrial isomerism was made – essentially he has two right versions of any organ with multiples in the body.
“Looking at him you can’t tell there’s anything wrong unless he takes his shirt off and you can see the scars from drains and the cardiac surgery,” Ms Marios said.
“Apart from running around and getting tired, he knows all he’s got to do is have a bit of
“Apart from running around and getting tired, he knows all he’s got to do is have a bit of a rest, but for him it’s about 30 seconds and he’s back up and running.”Michelle Marios
A lifeline for the Marios family has been the support of Heartkids who provided support and advice to the family since that first 20 week scan.
February 14 is Heartkids Sweetheart Day, a national awareness campaign to support children with congenital/childhood heart disease, which is the leading cause of death of Australian babies under a year old.
Every day, eight babies are born with congenital/childhood heart disease and four lives are lost each week.
Through public donations, HeartKids is hoping to raise $704,000 to expand its specialised family support services that are not government funded, and yet are a lifeline for the thousands of families that turn to HeartKids each year for assistance during incredibly difficult times.