Belfast Telegraph

Baby Joe back home with parents after second massive open-heart surgery

By Victoria O'Hara

The mother of the little boy who helped launch the Belfast Telegraph baby heart campaign spoke of the "rollercoaster" journey her family experienced after his lifesaving heart operation.

After four weeks in a hospital in Birmingham, Kerri Degnan and her husband William finally returned home to Larne last Monday with 10-month-old Joe, who now has stainless steel wire holding his ribs together until he heals.

Kerri (32) talked of the spirit among other Northern Ireland parents whose children face surgery, the top team looking after her baby and the moment when she finally broke down when he sustained an infection.

Joe underwent his second planned open-heart surgery for a congenital heart condition on May 30. A team of nine people under Mr Bill Brawn, including two surgeons, were involved in the 77-minute operation.

The first planned operation took place at just six days old.

Joe had a 'glenn procedure', which involves creating a shunt in his heart to reroute the blood.

"The surgery took 77 minutes but he was away in theatre for six hours," Kerri said. "They cooled his body down to 18 degrees to shock the heart into stopping."

Joe remained in intensive care for three days, and within 10 days he was set to go home.

"That was very quick," Kerri said. "He started breathing on his own and was coming off the ventilator and being reduced off the morphine; they had to keep increasing the sedative because he kept trying to wake up. He is such a strong wee boy. The surgeons are just first class, they are out of this world. The passion that they have, it is as if Joe is their own child."

But then Joe developed e-coli in his chest wound. Kerri said: "I just completely broke down. You cope well with the heart surgery bit, and sail along nicely. He had a wound infection the first time he had surgery and that is the one thing we said we didn't want to happen – then it did."

A week after his second major life-saving surgery Joe once again needed his chest reopened.

"You just come to a point when you just have had enough and I broke down," Kerri said.

"It was just because he was going to have to go through theatre again, on to the breathing machine – he didn't deserve it.

"But these things do happen and you just have to be strong."

Joe had a further two-hour surgery under surgeon Tim Jones.

Kerri said: "Tim had carried out Joe's first surgery when he was just six days old. He was very good at explaining what had happened. We have a lot of faith in him. It was a frightening time as it was different to the heart surgery. No parent wants to have to be in that position but you have to be strong and get through it."

Since arriving at Birmingham Children's Hospital Kerri had remained by Joe's bedside.

She said: "I slept in a chair or when he was moved to another ward they had a cot bed for me. The staff were very good, they would have done anything. But there were two other families from Northern Ireland over getting treatment. In that situation it is so important that you chat to them – it stops you from going mad."

She said visits from her mum and brother also helped, adding: "Talking to others in your situation and can relate to how you are feeling is so important. And also to see family really helped."

After nearly four weeks Kerri and William were hopeful they could bring Joe home.

"We were let out of the ward and into the Ronald McDonald House at a weekend – where family members can stay.

"We knew it was getting close. We just didn't want to mention it to anyone!"

Last week the Degnans left the hospital and flew home.

"It was just fantastic getting home," she said. "I've said it before that I'm determined that Joe's heart condition won't define him.

"He is a little boy with his own personality and I don't want him to be treated differently because his heart is different.

"I know Joe will have to have another surgery before he is five. But now we can just start to get on living life."

Life-saving operations planned before tot was born

Joe’s journey began before he was even born.

Experts at the Royal Victoria Hospital identified that baby Joe was going to need help to fix his heart immediately after his mum had given birth to him.

His parents Kerri, a civil servant, and dad William, a plumber, knew their first baby would be born with heart problems after his condition was spotted during a 26-week scan.

A plan was made for when he arrived at 10.15pm on August 14, 2013. Within 48 hours he was travelling in an air ambulance to undergo open heart surgery at Birmingham Children’s Hospital — the first of three life-saving operations he will need.

His parents followed their two-day-old baby in a scheduled flight describing it as the most “frightening journey” of their lives.

He underwent surgery when he was just six days old.

Joe is one of hundreds of babies affected in Northern Ireland each year with congenital heart problems. His condition means he was born with double inlet left ventricle. Babies with this condition have only one working pumping chamber (ventricle) in their heart.

This means he suffers a lack of oxygen to his blood and major organs that can lead to breathlessness, making it difficult to feed.

After their experience, Kerri and William wanted to help raise awareness of congenital heart problems. And wee Joe, as he is affectionately known, became one of the main faces that launched a major campaign by the Chest Heart and Stroke Association — The Baby Hearts Appeal.

It raised money for a three-year research project carried out by the University of Ulster in association with consultant paediatric heart specialists from the Royal Belfast Hospital for Sick Children.

It aims to find out why some children are born with heart problems, and also the possible risk factors for developing congenital heart conditions.

However, the family then prepared in May to once again go back to Birmingham.

“We weren’t nervous but we just felt that it was something that we have to do,” Kerri said.

The second operation — also a success — took place earlier this month when he was just 10 months old.

They now face a third and final operation within five years.

“The last year really has been a rollercoaster,” Kerri said. “Everyone who has helped us has been amazing, from the nurses and doctors in the Royal Victoria Hospital to the team in Birmingham.

“And to be a part of the awareness campaign was also amazing.

“We just wanted to help raise the profile of children born with the same condition as Joe.”

Telegraph readers can still make donations to appeal

Congenital heart disease is the name given to heart conditions that babies are born with.

It happens all over the world, in families from all walks of life — but wherever it happens, it can be life-threatening.

In 2010, congenital heart disease resulted in about 223,000 global deaths.

In most cases, it is not known why babies are born with congenital heart disease. Some genetic and environmental factors can be involved but the majority of cases remain unexplained.

And until the causes are known there’s no way we can stop it happening.

The Baby Hearts Study is a pioneering research project — funded by Northern Ireland Chest Heart & Stroke (NICHS) — which aims to increase the understanding of the possible causes of congenital heart disease. It works on a very simple principle.

Researchers at the University of Ulster in conjunction with Paediatric Cardiologists at the Royal Belfast Hospital for Sick Children are gathering vital information by speaking to families from across Northern Ireland.

Some of those families will have babies who were diagnosed with congenital heart disease either before or after they were born. And some of those families will have healthy babies, born without congenital heart disease. By comparing data on the backgrounds, lifestyles and environments of these families we hope to isolate the key differences.

Once they have successfully identified the causes of congenital heart disease, doctors may be able to recommend strategies to prevent it.

Dr Frank Casey, Consultant Paediatric and Fetal Cardiologist, Royal Hospital for Sick Children, said: “Within Northern Ireland it’s actually easier to do this kind of important study, because all of the babies with heart problems attend one big centre in Belfast.

“Here we can capture the information on all of the babies in Northern Ireland who have any significant heart problems. This is our starting point. The ultimate aim is to find a way of preventing congenital heart disease.”

Generous Belfast Telegraph readers helped to raise £20,000 towards the appeal last year.

We selected the appeal to support for our annual Christmas campaign, but donations can still be made.

If you would like to help please fill in the coupon on this page and send it to the Chest Heart and Stroke Association.

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