Belfast dad on son’s open heart surgery at three-months-old

Dr Darragh Lydon’s son Owen, who is now 2, was admitted to hospital as a baby with a major congenital heart defect and multiple holes in his heart

A Queen’s University Belfast academic has opened up his son’s open heart surgery at just three-months-old.

Dr Darragh Lydon’s son Owen, who is now 2, was admitted to hospital as a baby with a major congenital heart defect and multiple holes in his heart, with no prior antenatal diagnosis.

Owen spent months in Clark Clinic, the children’s heart unit in the Royal Belfast Hospital for Sick Children.

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Facing a long hospital stay, the family, including their young daughter, found the ward overwhelming with the amount of information and the constant noise from the machines.

On World Heart Day on September 29, Dr Lydon and his students have launched a virtual tour of Clark Clinic. The virtual tour is designed to ease parents’ practical concerns of the unknown by showing them where their child will be. It also supports parents in explaining the experience to siblings and other family members, as well as helping to promote greater understanding and inclusion.

Dr Lydon told Belfast Live about Owen’s journey. He said: “My wife Hollie went into labour. She was 32 weeks when her water broke and he was born at 35 weeks.

“He was a little small. He was like 4lbs10 I think, but our daughter Annie was also premature, she was quite small but she was fine.”

The parents then took Owen home. Father-of-two Dr Lydon said: “He was a little bit slow with feeding, but again, so was Annie. We weren’t massively concerned, but when he was about just over two weeks old, his right hand was very swollen compared to his left, and Hollie was concerned about it.

“So we went to get him checked. As soon as we got into A&E, the triage part, the nurses were like, ‘Is his colour always like that?’

“And we we’re like, ‘Yeah, he’s kind of pale’, and they [said], ‘Is his breathing always that fast?’ We said, ‘Yeah, it is.’

“They immediately took him in and started giving him scans. They called in a consultant cardiologist to do an echo on Owen’s heart.

“After half an hour reading the results, he called us in, he closed the door behind him and sat down – we knew something was up then.

“They told us that Owen had basically a very large hole in his heart, another smaller hole in his heart, and also two of his arteries were misaligned.”

Owen was then admitted to hospital immediately. Dr Lydon continued: “That was Thursday night. Then they said he was going to have to have surgery as soon as he [could], it [was] obviously life threatening for him.

“We were admitted into Clark that night. I stayed with him overnight and when I was in Clark, I came in at like 9, 10 o’clock at night… There’s so much information. We just got diagnosed. There were machines beeping the whole time. The ward is really busy. I was obviously awake all night. All I could hear was the noise of the machines, I was completely stressed out in there.

“Then on the Saturday, Owen’s breathing got worse. Owen’s [respiratory rate] was 140 [breaths per minute] on Saturday afternoon.”

The child was then admitted to ICU and was brought to Dublin the next day for emergency surgery.

Dr Lydon told: “Because he was so small, he was only probably about 2 kilos at the time, they said it was too much of a risk to have open heart surgery, a baby that small.

“They basically did a temporary procedure where they put little tubes in his heart to inflate the arteries, to keep the blood flow through it to keep them alive until they could do the procedure.

“We had to go back to Clark Clinic for about six weeks to try and get weight on Owen. Because he had the heart condition, it was really hard for him to gain weight, so it took 6 weeks to go up to 3 kilos in weight.”

Owen then had open heart surgery in April 2023. The Queen’s University academic said: “They did the full repair. He was about three or four months.”

Owen was first admitted to hospital on February 17, and came home five months later in July.

Today, Owen is thriving, and Dr Lydon hopes the project will not only provide reassurance to other families but also highlight the incredible work of the Clark Clinic team and the support of the Children’s Heartbeat Trust.

Explaining the new virtual tour, the father-of-two told Belfast Live: “The way it works is they can walk around at their own pace in the ward and see what’s there, see all the areas, see all the bed spaces and kind of a little intro from all the specialists there, to see what their roles are.

“It’s also for families or siblings who can’t come onto the ward because all the kids aren’t allowed on usually. Because Owen was in for so long, they let us bring his sister in. Annie is autistic, so she didn’t understand where he was. We tried to show her. She couldn’t handle it, it was too stressful, all the noise and everything.

“If she had seen the tour beforehand, she at least would have known ‘this is what I’m going to be in for’, so it would have been a lot easier for her. She couldn’t stay with him, she didn’t see him for five months essentially while he was in hospital.”

Cathy Dalton, Family and Youth Support Services Manager at the Children’s Heartbeat Trust, welcomed the resource: “Receiving a cardiac diagnosis for your child is extremely difficult and for families in this position, the unknown can be one of the most stressful elements of coming to terms with the diagnosis. This virtual tour offers young people with congenital heart disease, their parents and siblings a chance to familiarise themselves with Clark Clinic, before they are admitted, easing anxiety and helping them feel more prepared.

“We are incredibly grateful to Dr Lydon who can fully understand how beneficial this virtual tour will be for the family unit as well as his wonderful team for creating such a valuable resource that will bring comfort and reassurance to so many heart families across Northern Ireland.”

You can see the virtual tour here.

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