Young mum Emily knew her baby boy would need major surgery after he was born. But she was not prepared for the heartbreaking reality

A young mother had to watch as her baby underwent major open heart surgery and a lung bypass at just six months due to a rare condition.

Emily Dennis, from Ipswich, found out her first-born Otis had a congenital heart defect when she was pregnant.

The 23-year-old gave birth to Otis at 39 weeks, and while he looked happy and healthy, doctors told the mother and her partner, Ollie Reeves, 26, that he would need surgery to correct the defects in his heart.

After contracting a potentially fatal virus, Otis’ surgery was pushed forward and Emily had to watch helplessly as her six-month-old was wheeled into theatre.

‘I cried. Handing your baby off to doctors and nurses you don’t know is a difficult thing. You put all your trust and all your heart in them, the mother told FEMAIL.

Emily knew something was wrong with her baby after a routine scan when she was 20 weeks pregnant.

The sonographer was checking her baby’s vitals when he told her he couldn’t get an accurate reading of the heart and she would have to come back the next day to be looked at by a larger, more experienced team.

She was there for three hours while doctors tried to get a clear picture of her baby’s heart.

‘I was in a panic because I knew something was clearly wrong. My motherly instincts kicked in,” she said.

The next day, Emily got a phone call that confirmed her fears.

Otis had Tetralogy of Fallot (TOF), which is a rare congenital condition in which the heart has four defects that affect its ability to pump blood and oxygen around the body.

The cause is unknown, and if untreated patients can have seizures where blood oxygen levels drop, convulsions, high risk of a heart infection called endocarditis and arrhythmias.

Emily’s pregnancy was considered high risk and she was closely monitored until she was induced at 39 weeks.

“I had scans done every week, I had blood tests done, everything you could think of to make sure he was OK,” she said.

“(Otis) also measured on the smaller side, which is common for TOF babies as they can’t grow properly because their heart isn’t working properly.”

On 9 August 2023, Emily gave birth to Otis naturally but was unable to hold him when he was rushed to the Mater Hospital’s Neonatal Critical Care Unit.

‘I was prepared for it, but it breaks your heart when your baby is suddenly taken away and you can’t cuddle with them. I didn’t get the golden hour that mother talked about at the beginning,’ said the mother.

‘My partner went up with him straight away, so he got to give him the first hug, which was so sweet. The relationship the two have is beautiful, and I think it’s because of the first hour he got with him.’

The doctors and parents weren’t sure how long Otis would need to stay in critical care, as they needed to see how his heart would do on the outside.

“Up until that point, my placenta had done pretty much all the work, so they had to keep a close eye on it,” Emily said.

“Typically what happens for some (tof babies) is their oxygen stats get very low and they have to do a shunt, but Otis did great so they didn’t have to.”

Otis spent only a week in the NCCU and was well enough to go home with his parents just a week later, but they knew he would need surgery on his heart eventually.

‘He was such an angel baby, there was nothing wrong. We had our monthly check-ups and then it all went downhill when he got sick, Emily said.

One day when he was six months old, Otis stopped eating and drinking, so Emily took him to the emergency room, where he was diagnosed with Respiratory Syncytial Virus (RSV), an infection of the lungs.

“For normal babies it can be quite lethal, so for him with his heart condition it just made everything three times worse,” Emily said.

Otis was put on a feeding tube and he was struck by a terrifying ‘tight spell’ which is common in babies with TOF.

A tet spell is an episode where the oxygen level in the blood becomes dangerously low and causes the skin to turn blue.

‘He had to be pumped with oxygen. There are 20 or 30 nurses and doctors in the room trying to stabilize him. Until then he just wouldn’t eat so it went from zero to 100,’ Emily recalled.

‘I immediately burst into tears. I just saw my child turn blue, he’s limp, I thought he was dying because I’d never seen it happen before.’

Before he got sick, Otis’ doctors were satisfied with his heart function to the point they thought he wouldn’t need surgery until he was 10 to 12 months old.

After reviewing his condition, doctors determined that Otis needed surgery as soon as possible.

‘He had to wear an oxygen mask because he wasn’t stable. He just kept having spells. He was getting one or two a day, even with oxygen on,” Emily said.

On March 5, a month after contracting RSV, Otis was wheeled into the operating room for open heart surgery and a pulmonary bypass.

Emily and Ollie had to wait anxiously at home for eight hours before they got a call from the hospital to inform them that Otis was okay.

“The doctors took us into a room before we could see him to discuss how the surgery was going and what to expect when we went in there because it was extremely confronting,” the mother recalled.

‘He had so many tubes, so many drains. He wasn’t breathing on his own, so he had a lot of life support on him, tubes coming out of his neck, his chest, his mouth, everything. It was very, very intense. Ollie and I, we just cried.’

Fortunately, Otis recovered well from the massive procedure in which surgeons broke his sternum to repair his heart.

‘They took each piece out at a time. First the breathing tube came out, then the central lines that pumped him with medication, and then as each day went by, the drains would come out too, Emily said.

After a week, Otis was well enough to go home, which Emily said was ‘nervous’.

‘There is a certain way you have to pick up babies who have had open heart surgery. They’ve had to break the chest so you can’t pick them up under their arms, Emily said.

“The first two or three weeks he was quite excited. We were still trying to manage his pain, but he took it really well. We slowly weaned him off the medication he was taking as the pain subsided’.

A month after the operation, Otis has regular check-ups to monitor his heart and is otherwise ‘bubbly, happy and smiling all the time’.

Surgeons were only able to partially repair his heart, so he will need another operation, but Emily is confident he will be in good hands.

‘The healthcare staff are absolute legends. I honestly couldn’t thank them enough for everything,’ she said.

‘They have been my emotional support, my shoulder to cry on, people I can talk to. It’s incredible what they can do’.