Young mum Emily knew her baby boy would need major surgery after he was born. But she wasn’t prepared for the heart-wrenching reality

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

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

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

After being struck down by a potentially fatal virus, Otis’s 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 the doctors and nurses you don’t know is a difficult thing. You’re putting all of your trust and all of your heart to them,’ the mum told FEMAIL. 

Emily Dennis (left), from Ipswich, found out her firstborn Otis had Tetralogy of Fallot (TOF) when she was 20 weeks pregnant (pictured with partner and Otis’s dad, Ollie Reeves, 26) 

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 informed her he couldn’t get an accurate reading of the heart and she would need to come back the next day to be looked at by a bigger and more experienced team. 

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

‘I was panicking because I knew there was clearly something wrong. My maternal 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 where the heart has four defects affecting its ability to pump blood and oxygen around the body. 

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

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

Emily knew something was wrong with her baby after a routine scan. The sonographer was checking her baby’s vitals when he informed her he couldn’t get a clear reading of the heart

‘I was having scans done every week, I was getting bloods done, everything you could of think of to make sure he was okay,’ she said. 

‘(Otis) was also measuring on the smaller side which is common for TOF babies as they can’t grow properly because their heart’s not functioning right.’

On August 9 2023, Emily gave birth to Otis naturally but wasn’t able to hold him as he was whisked up to Mater Hospital’s neonatal critical care unit. 

‘I was prepared for it but it breaks your heart when your baby gets taken away all of a sudden and you can’t cuddle with them. I didn’t get that golden hour mum’s talk about at the start,’ the mum said. 

‘My partner went up with him straight away so he got to give him the first snuggle which was so sweet. The relationship those two have is beautiful and I think it is down to that first hour he got with him.’

Doctors and the parents were not sure how long Otis would need to stay in critical care as they had to see how his heart would fare on the outside. 

‘Up until that point my placenta had been doing pretty much all of the work so they needed to keep a close eye on that,’ Emily said. 

‘Typically what happens to some (babies with TOF) is their oxygen stats go really low and they have to do a shunt but Otis was doing superb so they didn’t end up needing to do that.’

On August 9 2023, Emily gave birth to Otis naturally but wasn’t able to hold him as he was whisked up to Mater Hospital’s neonatal critical care unit

Otis spent just 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, nothing was wrong. We had our monthly checkups then it all went downhill once 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 it was found he had Respiratory Syncytial Virus (RSV), an infection of the lungs.

‘For normal babies, it can be quite deadly so for him with his heart condition it just made everything triple times worse,’ Emily said. 

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

A tet spell is an episode where the oxygen levels in the blood become dangerously low and cause 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 get him stable. Up until that point he just wasn’t feeding so it went from zero to 100,’ Emily recalled. 

‘I burst into tears straight away. I just watched my child turn blue, he’s limp, I thought he was dying because I’d never seen that happen before.’

When he was six months old Otis contracted Respiratory Syncytial Virus (RSV), an infection of the lungs, and his surgery had to be pushed forward

‘He had so many tubes, so many drains…and tubes coming out of his neck, his chest, his mouth, everything. It was very, very intense. Ollie and I, we just cried,’ Emily said

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.

Upon reviewing his condition, doctors determined Otis would need surgery as soon as possible. 

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

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

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

‘The doctors took us into a room before we got to see him to discuss how the surgery went and what to expect when we walked in there because it was extremely confronting,’ the mum recalled. 

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

Thankfully, Otis recovered well from the massive procedure which saw surgeons break his sternum to repair his heart.

Thankfully, Otis recovered well from the massive procedure which saw surgeons break his sternum to repair his heart

A month on from surgery, Otis is having regular checkups to monitor his heart and is otherwise ‘bubbly, happy and smiling all the time’

‘They were taking out each piece at a time. First the breathing tube came out then the central lines that were pumping him with medication and then as each day went, the drains would come out as well,’ Emily said. 

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

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

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

A month on from surgery, Otis is having regular checkups to monitor his heart and is otherwise ‘bubbly, happy and smiling all the time’. 

Surgeons were only able to do a partial repair on his heart so he will need another operation but Emily trusts he will be in good hands. 

‘The healthcare workers are absolute legends. Honestly, I could not thank them enough for everything,’ she said. 

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