Belfast Telegraph

Tuesday 29 July 2014

Help our Babies' Hearts appeal: Help Belfast scientists to save lives of babies around the world

Larne baby Joe Degnan after heart surgery when he was just two days old
Larne baby Joe Degnan after heart surgery when he was just two days old

The Belfast Telegraph has launched a major campaign to help raise money to fund groundbreaking research that could save the lives of babies battling congenital heart disease the world over, writes Victoria O'Hara.

This newspaper is supporting the Chest, Heart and Stroke 'Help our Babies Hearts' appeal as our Christmas campaign this year.

We are asking our readers to help make congenital heart conditions a thing of the past.

The appeal will help to fund major research in Belfast, the Baby Hearts Study, which has the potential to have a worldwide impact.

Over the next four weeks – until Christmas Eve – we are asking 800 friends to donate, and make a massive difference to the lives of many families.

The study – which is being supported by the Northern Ireland Chest Heart & Stroke charity – aims to discover why some children are born with problems in the way their heart has formed.

It will investigate possible risk factors for developing congenital heart conditions. If 800 new supporters donate at least £25 each, that will pay for 110 babies from across Northern Ireland to take part in the research study.

That would make a significant contribution to the £172,000 needed for the three-year project.

Congenital heart disease is the most common birth defect in children born in Northern Ireland with, on average, 250 children per year born with one.

Roughly one third of these children will require open heart surgery or other interventional procedures.

There are 35 known types and fundamentally the causes or reasons why most congenital heart defects occur, are not known. It is, however, known that viral infections can interfere with the development of the baby's heart.

One example is if a mother contracts German measles during pregnancy.

Heredity can also play a role in congenital heart disease, which develops in the womb.

Helping us launch the campaign is Joe Degnan from Larne, Co Antrim. The three-month-old is one of hundreds of babies affected in Northern Ireland each year.

In August, he underwent surgery aged just six days old.

His mother Kerri (32) said supporting crucial research is vital to helping babies like Joe in the future.

"I'd do anything to help make sure that no other family has to go through what we've been through," she said.

"That's why I'm supporting the Baby Hearts Study by telling our story. You can support it by donating towards the research."

The study is being conducted by Professor Helen Dolk from the University of Ulster's Faculty of Life and Health Sciences in collaboration with Dr Frank Casey and Dr Brian Craig, Consultant Paediatric Cardiologists at The Royal Belfast Hospital For Sick Children. One advantage of carrying out the study in Northern Ireland is that all affected babies are treated at one medical centre – Clark Clinic in the Royal Belfast Hospital for Sick Children.

Andrew Dougal, Chief Executive of NI Chest Heart & Stroke said: "This is local research with potentially worldwide impact and we're proud to support it."

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Enjoying life: Kerri Degnan with Joe Jonathan

Joe, alive today thanks to incredible expertise

An image of a proud father holding his newborn son takes pride of place in the house of Kerri and William Degnan.

But the photograph wasn't taken at their Larne home. The touching moment was instead captured in the Royal Victoria Hospital. That was where baby Joe spent the first weeks of his young life after being born with a serious heart defect.

The little boy was born at 10.15pm on August 14 this year.

For just five precious minutes Kerri (32) was able to hold him before the medical team at the Royal had to begin his life-saving treatment. Within 48 hours he was travelling in an air ambulance to Birmingham to undergo open heart surgery.

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

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

He was born with double inlet left ventricle. Babies born 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 and can lead to breathlessness which makes it difficult to feed.

"At my 26-week scan they discovered his heart hadn't formed correctly," Kerri said.

"The prognosis wasn't good.

"The first time we got the news it really wasn't a great feeling at all. We both took the day off work the next day and spent time together. The only thing that kept us going was we knew while he was in the womb he was happy and healthy. It was only when born that his problems would start."

After his operation, Joe was still having difficulty breathing.

A build-up of fluid was putting pressure on his heart and lungs. This caused his body to swell to such an extent that his eyes were swollen shut.

He then had to undergo a second surgical procedure to close his chest.

It had been left open because his tiny body would not have been able to cope with his swollen heart after the original operation.

Still his problems continued. He was placed on a ventilator delivering pure oxygen, but his skin remained grey. Finally, he was connected to a machine that helped strengthen his lungs.

William (36) recalls having to adjust the face mask constantly.

"We were living minute to minute," he said. "The ward was full of other ill children and alarms would go off regularly.

"Sadly, the eight-year-old boy next to Joe died during our stay. We changed Joe's middle name to Harris in tribute to him."

Kerri added: "The whole experience was hard, completely life changing and very humbling. We are different people now and have altered how we express emotions."

The family spent almost four weeks in Birmingham, followed by another three weeks and two days in the Clarke Clinic in Belfast.

It took a whole team of NHS staff to save Joe's life – a team Kerri and William say they will be forever grateful to.

"The surgeon in Birmingham was wonderful. And they are just fantastic in the Clarke Clinic, we were just overwhelmed by the team there." Kerri said.

Finally, when he was eight weeks old, the couple were told they could take Joe home.

"When we got home, we just thought, is this real?" said Kerri.

"On the first night he was there we just sat up and watched him and listened for every wee noise."

Kerri said because of their experience she believes it is important to support the research into finding the causes of congenital heart disease.

She said: "I wanted to talk about it because I think this research is so important. Not just for Joe's sake. I know the standard answer that you hear is that you just don't want any other baby to go through it. But that is so true."

Now seven weeks at home, Joe looks like any normal baby.

"He deserves every chance of normal life. Yes, we will know his limits but his heart condition is not who he is. It is part of him but it won't define him," said Kerri.

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Every day is special: Grace with her mother Angela
 

Grace has condition so rare, it's named after her

Three-year-old Grace Spooner has a condition so rare that experts at Queen's University refer to it as 'Grace's Syndrome' and say they have not seen a case like it in 30 years.

The little girl from Groomsport, Co Down, was born prematurely at 35 weeks with a condition called Tetralogy of Fallot.

It is a congenital heart condition which affects four major areas of the heart.

She also has a range of other physical problems, including partial deafness, sight problems, multiple spleens, a narrowed and twisted bowel and cognitive difficulties.

In her short life Grace has been admitted to hospital 13 times.

Caring for and supporting her since birth have been her mother Angela (35), father Anthony (40) and brothers Matthew (11) and Ben (5).

As her mum suffers from diabetes – a known potential risk for congenital heart defects – she was closely monitored for the condition at the Ulster Hospital during the early stages of her pregnancy.

Grace initially needed surgery to close a hole in her heart.

But before it could be performed Grace had to be a particular weight and had to be placed on a supplementary diet to build her up.

Surgery was planned just before her first birthday on April 27, 2011.

Unfortunately it had to be postponed because she became sick the day before. But on May 8 that year her surgery, which lasted for two hours, finally went ahead.

The first night post-surgery Grace was stable as she was on a heart bypass machine.

But the next day, as she was taken off the machine, her heart went into shock and her organs began to shut down.

She was literally wrapped in cotton wool to keep her warm and given a 24-hour critical recovery period.

After that there would be nothing the medics could do for her. Thankfully, within that period, her heart restarted and she began to recover.

She was initially in the high dependency unit before being transferred to the children's paediatric unit.

In January Grace had an echo test which was fine, but she will need further surgery as she grows, to replace the patches on her heart.

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Years of battling: Chloe Fisher

Chloe had her first operation at just 10 days old

When Chloe Fisher was born in December 1999, her parents were given the devastating news that their baby might not survive.

Within 24 hours of her birth she had to be rushed from Daisy Hill Hospital in Newry, to the Royal Victoria Hospital in Belfast.

It was feared the baby girl, from Kilkeel, had congenital heart disease. Further tests revealed she had Fallot's Tetralogy, a condition which means there are at least three separate faults in the heart. Chloe had eight faults with both her heart and lungs.

Her parents, Brenda and John, were told she would have to undergo immediate surgery. Her first major operation was when she was only 10 days old. She had her second bout of surgery aged just 15 months old.

Chloe's condition is the most common cause of blue baby syndrome. The skin turns blue because of a lack of blood oxygen and it is thought to be caused by environmental or genetic factors, or a combination of both.

Over the coming months, Chloe became more blue.

In 2001 she underwent surgery that lasted eight hours – the longest eight hours of Brenda and John's lives. Chloe made it through the delicate operation, but Brenda recalls going to see her in intensive care, surrounded by tubes and drips.

A pacemaker had been fitted in case she needed it. Thankfully, she didn't.

For the first time, the Fisher's noticed their little baby girl had pink fingers and toes.

Now 14 years old, Chloe has full marks for attendance at school.

At primary school she often needed a nap because her brain wasn't receiving enough oxygen from her heart and lungs. As a result, she would also have to go home early.

Now Chloe is in secondary school; however, her classmates are less aware. So, if she becomes tired or breathless, people don't always understand why.

Chloe faces the possibility of one further operation after she has stopped growing. But she is determined to live life to the full.

"It's made me more determined to push myself harder to try and fit in," she said. "I need to be more independent."

But her mum says she still feels guilty about why Chloe was born with the condition and feels it is so important to find the cause.

"I just ask the question so many times: what did I do wrong? I just feel so guilty.

"I feel it's been my fault that she's been born like this and I would just love if they could find out what causes this problem," she said.

"It would be great for mothers-to-be to know what to do or what not to do, and I just think it's super that this research is going ahead."

Donations already flooding in for Christmas campaign 

Northern Ireland can become world leaders in this field

ABOUT OUR APPEAL...AND WHAT YOU CAN DO

OUR AIM: to help fund Belfast-based research into congenital heart disease in babies by raising at least £20,000 through our campaign

OUR TARGET: to enlist 800 supporters who will donate £25 each, covering research costs for 110 babies in Northern Ireland

HOW TO HELP: you can make a donation via www.nichs.org.uk/baby or alternatively telephone 028 9180 2080

USE YOUR COUPON: just print out the coupon below , fill in your details below and send it to the address at the bottom to make a contribution to this vital three-year study

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