A huge red scar travels down the chest of nine-month-old Otis Reeves.
You would not know from his cheeky smile, but little Otis’s fight for life began before he was even born due to congenital heart disease.
Now, after undergoing a marathon eight-hour operation to repair his tiny heart, he is back home and thriving.
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Australian charity Heart Kids says congenital heart disease refers to abnormalities of the heart, including malformation of the heart, heart valves or major blood vessels, present from birth.
Defects can range from simple to complex and can occur alone or in groups. It is the most common congenital disorder in newborns, affecting one in 100 births, or between 2400 and 3000 Australian babies a year.
The son of US comedian and talk show host Jimmy Kimmel was born with a rare congenital heart defect, Tetralogy of Fallot (TOF).
Billy Kimmel underwent his first open-heart surgery at three days old and another a few months later to close a hole in his heart. Now seven, he underwent more open heart surgery in May to replace a valve in his heart.
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Otis’s condition was picked up when his mother, Emily Dennis, of Ipswich in Queensland, went for her 20-week pregnancy scan.
“[The sonographer] just kept saying, ‘We can’t get a clear picture of his heart,” she said.
She returned the next day and sonographers spent three hours taking images of her unborn son’s heart.
“They didn’t say anything but the next day I got an urgent notice from my GP,” she said.
Dennis was told her baby might have a hole in the heart, but was assured these sometimes rectified themselves.
Three weeks later, she went for a scan at the Mater Centre for Maternal Foetal Medicine at Brisbane’s Mater Mothers’ Hospital.
“Within 15 or 20 minutes they took me into a room,” Dennis said.
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Like Billy Kimmel, Otis had Tetralogy of Fallot (TOF), a rare combination of four defects that disrupts blood flow through the heart.
According to Children’s Health Queensland, it is characterised by a hole in the wall between the pumping chambers of the heart; an obstruction to the flow of blood from the right ventricle to the pulmonary artery and lungs; a thickening of the muscle in the right ventricle and a wrongly positioned aorta.
Dennis and her partner Ollie Reeves were given the option of terminating the pregnancy, which is sometimes linked to other syndromes, but they declined.
“I had that mum instinct that he was going to be alright,” Dennis said.
She was told to prepare for the worst, including the possibility her baby could be stillborn.
The pregnancy was closely monitored with monthly scans to check his heart and growth. She was also warned what to expect after his birth.
“They gave me the worst-case scenario that he would be born blue and would need to go straight to surgery to get a shunt put in to keep him going,” she said.
A decision was made to induce labour at 39 weeks so a neonatal intensive care room could be ready.
Otis was born at Brisbane’s Mater Mothers’ Hospital on August 9, 2023.
“He got put on my chest for maybe five seconds before they took him straight away to NICU,” Dennis said.
Luckily, he was born ‘pink’, and after two days in NICU for scans and other tests, he moved to a ward, and went home a week after his birth.
The plan was for Otis to undergo his first open heart surgery when he was 10 to 12 months old.
The young couple were told to look out for signs Otis was not getting enough oxygen. Babies with TOF will often turn blue as a result of hypercyanotic, or ‘tet’ spells.
Otis did not have any until he became ill with RSV at six months. The couple took him to hospital, where he suffered his first spell the next day.
“After that, he would have one every couple of hours,” Dennis said.
A decision was made to bring forward his surgery, which took place on March 5 at Queensland Children’s Hospital.
Otis was placed on a heart-lung bypass machine while surgeons worked for eight hours to repair his tiny heart.
“They put a patch over the hole in the centre of the heart and moved the aorta into the correct place,” Dennis said.
“But the pulmonary valve was really, really small so they had to restructure it.”
Dennis recalls bursting into tears when she saw Otis for the first time in the paediatric intensive care unit. He was on a ventilator and covered in tubes and wires.
“When we walked into the room there were doctors and nurses working on him because he was unstable. His heart rate and blood pressure were really low, so it was really scary,” she said.
After three days, he was moved to the cardiac ward before going home a week after his surgery. Dennis noticed a difference immediately.
“He was so much more energetic. He was drinking so much more. Before, he was very lethargic.”
While babies who go on heart-lung bypass can have some developmental delays, Otis is now close to meeting milestones.
The operation was successful, but Otis needs to be monitored closely and undergo further surgery sometime between the ages of four and 15 to replace his pulmonary valve, which is leaking.
He is also at risk of developing a heart infection called endocarditis.
The couple is full of praise for staff at the Mater, Mater Centre for Maternal Foetal Medicine and Queensland Children’s Hospital.
The Mater’s neonatology director Dr Pita Birch said Otis was one of 165 babies admitted each year to the neonatal critical care unit with cardiac problems.
“We’re thrilled to see Otis doing well – he’s a real little battler,” Birch said.
Otis was the face of the recent 9Telethon in Queensland to support The Mater Foundation and Mater Little Miracles.
You can make a donation to The Mater Foundation here or Heart Kids here