Belfast Telegraph

Wednesday 23 July 2014

Belfast Telegraph readers raise £20k for infant coronary research

Little Joe Degnan at home with mum Kerri

Thanks to your amazing generosity, in just four weeks we have raised thousands of pounds to help fund groundbreaking research that could save the lives of babies battling congenital heart disease.

As our Christmas campaign, we backed the Chest, Heart & Stroke's (NICHAS) Baby Hearts Appeal appeal and asked you to help make congenital heart conditions a thing of the past.

Thanks to the kindness of hundreds of readers we hit the target set and 110 babies have been funded to take part in the Baby Hearts Study – research that has the potential to have a worldwide impact.

The Belfast-based study will investigate possible risk factors for developing congenital heart conditions. NICHAS is raising £172,000 overall for the study that aims to discover why some children are born with conditions that affect the working of the heart.

In the last four weeks, families from around Northern Ireland who have been touched by congenital heart disease told us their story and why this appeal was so important.

Helping us launch the campaign was Joe Degnan from Larne, Co Antrim. The four-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 was vital in helping babies like Joe in the future.

"I just want to thank everybody who donated, whether it was a big or small amount. I'd do anything to help make sure that no other family has to go through what we've been through," she said. Andrew Dougal, chief executive of Chest Heart & Stroke, said he was delighted by the efforts of the public.

"We have 110 babies funded to take part in the Baby Hearts Study thanks to the Belfast Telegraph and its wonderful readers!" he said.

"A few weeks ago, we asked if you could help us raise £20,000 by Christmas Eve for the Baby Hearts Appeal. You did it – and donations are continuing to come in."

Mr Dougal said there were many people he wanted to thank – including the families who shared their experiences and the Belfast Telegraph readers.

"There were stories of pain, devastation as well as love and hope. And they touched our hearts in a way nothing else could," he said.

"Thank you to the Belfast Telegraph. It's been wonderful to have such a huge opportunity to tell the people of Northern Ireland about the wonderful work their money can do in supporting world-class research being undertaken right here in Northern Ireland.

"Thank you to every reader who donated. We've been absolutely stunned by people's generosity."

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

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.

Mr Dougal added: "Thank you to the researchers who will put the money to good use as they unravel the mysteries of congenital heart disease.

"The findings will have applications not just in Northern Ireland but worldwide."

The charity is continuing to fundraise to reach the overall £172,000 total.

"If you know someone who hasn't donated but would like to, please ask them to look out for our continued appeals for support for this vital research," Mr Dougal added.

 

Baby Joe's mum tells of delight at homecoming

The mother of baby Joe Degnan has said a huge "thank you" to the hundreds of readers who helped to raise thousands of pounds for vital research into congenital heart disease.

Today is the end of our annual festive appeal and the generosity has been overwhelming.

Thanks to your efforts more than 100 babies will take part in a major study based in Belfast that will research the cause of congenital heart defects.

The importance of the research was highlighted by a startling image of Joe after life-saving heart surgery – with a sticker holding his little chest together– which helped to launch the campaign.

Joe's mum Kerri Degnan said she was both "touched and delighted" by the appeal's response.

"I just want to thank everybody, all the readers and members of the public who donated to the appeal – whether it was a big or small amount, it has made a real difference," she said.

Kerri (32) said the study can hopefully help save lives.

"I think a lot of people were surprised to find out that babies can have heart conditions too," she said. "But people have really responded – it is just great.

"Anything that they can find out in the study, there is always something to be learnt – so thank you to everyone who donated."

Joe, now four months old, helped to launch the campaign at the end of November.

After undergoing heart surgery in Birmingham when he was six days old he is now spending his first Christmas at home in Larne.

Born on August 14, he was put on an air ambulance to Birmingham within 48 hours, where he had his op

He was born with a double inlet left ventricle. Babies born with this condition have only one working pumping chamber (ventricle).

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

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 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.

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

"It was exciting to bring him home," Kerri said. "He is getting bigger every day. And there is a new excitment around having him here for Christmas."

 

.. and the three special girls who defied the odds

 

Three-year-old Grace Spooner was born prematurely at 35 weeks.

The little girl from Groomsport, Co Down, has a condition so rare that experts at Queen's University refer to it as 'Grace's Syndrome'.

She has a severe form of Tetralogy of Fallot, and experts in Belfast say they have not seen a case like it in 30 years. It is a congenital heart condition which affects four major areas of the heart.

She also has a range of other physical problems.

Although she is just three, she has been hospitalised 13 times.

As her mum Angela (35) has diabetes – a known potential risk for congenital heart defects – she was closely monitored at the Ulster Hospital.

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

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 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. Thankfully, within that period her heart restarted and her recovery began.

She will need further surgery.

Sophie Reader Blackton is an energetic Dundonald three-year-old.

But at just two weeks old, after a routine GP visit, she was rushed to hospital where she was immediately put into intensive care.

After birth she was discharged from hospital as a healthy baby.

But during that GP appointment the observant doctor spotted something wrong with her heartbeat. She was rushed to hospital.

Sophie was immediately transferred to intensive care to stabilise her condition. Her arteries were back to front. She also had a serious narrowing of the aorta.

After operations, she was on life support for two weeks before finally being allowed home.

She has had to attend the Royal as an outpatient every six months, and in September underwent a straightforward procedure to have a cardiac catheterisation.

Her mum Caroline said: "I just think this research is so important. If these things can be detected early then families can be prepared which is a very good thing."

Chloe Fisher looks like any normal teenager, but the 14-year-old from Kilkeel had her first operation at just 10 days old.

Born in December 1999, her parents were told she might not survive and was rushed from Daisy Hill Hospital, Newry, to the Royal Victoria Hospital in Belfast.

Tests revealed she had Tetralogy of Fallot.

Her first major operation was when she was only 10 days old, and more surgery at 15 months.

Chloe's condition is the most common cause of blue baby syndrome. The skin turns blue due to a lack of blood oxygen.

Over the months, Chloe became more blue. In 2001 she had an eight-hour operation.

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

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.

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