Belfast Telegraph Babies' Hearts appeal: Dig deep to help save a life
Published 21/12/2013 | 12:30
More than 200 babies are born in Northern Ireland with congenital heart disease every year and you can help to find out why.
You can help babies like those highlighted by the Belfast Telegraph today – including two-week-old Carter Wilson and four-month-old Joe Degnan – as well as hundreds more by digging deep.
There are just three days left to support our Christmas Appeal, which is backing a research project from the Northern Ireland Chest, Heart & Stroke charity.
The Belfast-based study has the potential to influence global research into the mystery of why some babies develop heart problems in the womb.
Many infants diagnosed with congenital heart disease need to undergo life-saving operations in their first year of life. They can then go on to have an uphill struggle with their health.
While more babies are now reaching adulthood due to improved medical techniques and surgery than a generation ago, so much is still unknown as to the reasons behind this number one cause of death of babies in their first year. Belfast Telegraph readers are being called on to help fund a major new research project starting next year, which aims to explain why this happens and to prevent it.
Our Baby Hearts Appeal, in conjunction with Chest Heart & Stroke, will help fund a three-year research study of babies born with and without congenital heart disease, to provide answers to what causes this serious health condition.
The work will be carried out jointly by researchers at the University of Ulster, led by Professor Helen Dolk and paediatric cardiologists at the Royal Belfast Hospital for Sick Children. Overall, the project will cost £172,000, but we would like readers to contribute towards the cost of including 110 babies. We aim to raise £20,000 by enlisting 800 supporters.
It's hoped that by looking at the pre-natal experiences and health of the mothers in both groups and by comparing the results, the researchers can pin-point a potential trend.
Dr Brian Craig from the Royal Belfast Hospital for Sick Children has treated hundreds of babies for nearly 30 years and is very excited at what the results of the study will show.
"If our study group and controlled group found, for example, that with mothers who take folic acid while pregnant – as 40% of mothers now are because of the risk of spina bifida – that this also significantly reduced the risk of them having a child with congenital heart disease, then that would be a big breakthrough," said Dr Craig.
"Even if we can reduce the incidence of congenital heart disease, that's a positive thing."
Battling the odds... seven young fighters who demonstrate just how crucial this appeal is
He's just two weeks old, but Carter Wilson will soon face a life-saving heart operation.
Born with a large hole in his heart, the Co Down baby and his parents will hopefully be travelling to the Evelina London Children's Hospital for the operation to give him the best chance of survival.
His parents, Banbridge couple Erica and Gary Wilson, are waiting for confirmation of whether this will be just before Christmas or afterwards. Even though they will have to leave their other son and daughter at home, the parents know that every day counts.
Carter, who weighed just over five pounds when he was born, is being cared for at the Royal Belfast Hospital for Sick Children. With a head of blond hair, he is constantly watched over by his parents, as his tiny heart works hard to cope with the defect.
A band will be placed around Carter's heart to slow down the blood flow until it is big enough to undergo the surgery to close the defect.
"The sooner he gets the operation the better for him, although he needs to be well enough to go through it," said Erica (27).
Gary (31) added: "The placement of the band on Carter's heart is really a temporary measure and will help him until he is heavy enough, and healthy enough, to undergo the operation to close the hole, perhaps when he is around one."
Carter's congenital heart condition was picked up during his mother's 20-week pregnancy scan at Craigavon Area Hospital. Erica's care was then transferred the Royal Victoria Hospital where Carter's development was monitored the whole way through the 34-week pregnancy.
Her other two children, Kaden (7) and Jessica (4), had no congenital heart disease and she is at a loss to understand why Carter has.
"It was a really big shock as nothing had been wrong with my other two," said Erica.
"It would be really good to know why this happened with Carter. Any research that can help other babies and parents not to go through this has to be a good thing."
The case of Carter Wilson is just the latest highlighted by the Belfast Telegraph to emphasise the importance of our Christmas Appeal.
We featured the story of Larne baby Joe Degnan, who was born in August with a serious heart defect, and underwent surgery at just six days old.
He is doing well after undergoing 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.
Readers were also touched by the story of Grace Spooner (3), who was born with 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 was born prematurely at 35 weeks with a severe form of Tetralogy of Fallot.
It is a congenital heart condition which affects four major areas of the heart.
Sophie Reader Balkton
Sophie Reader Balkton (3) is a little girl full of life after facing a mighty battle for health.
The Dundonald girl was born with a congenital heart condition and had to have heart surgery at just four weeks old.
Tom (78) and Anne Johnston (77), from Donaghadee, decided to start a family in the 1950s, but were struck by tragedy. Their daughter Kay was born with the congenital heart complaint Tetralogy of Fallot.
Tommy, their fourth child, was born with a hole in his heart and died at just four months.
Kay, now 53, underwent a heart transplant aged 36 and said she felt lucky to have the quality of life she has now.
Matthew Cully is just 13 years old, but is already on his third pacemaker. Two hours after he was born Matthew had a pacemaker inserted into his chest and was in intensive care for three weeks. Heart problems had been diagnosed when his mother Carol was pregnant.
Chloe Fisher, from Kilkeel, was born in December, 1999 with Tetralogy of Fallot which means there are at least three separate faults in the heart. Chloe had eight faults with both her heart and lungs. Her first major operation was when she was only 10-days-old. She had her second bout of surgery aged just 15-months-old.
Now 14, Chloe has full marks for attendance at school.
Life-threatening disease that hits most vulnerable
Q What is congenital heart disease in babies?
A It's a range of defects in a baby's heart as it develops in the womb. Over 200 babies in Northern Ireland are born with life-threatening heart problems every year – roughly half of the parents don't know about the problem until after birth. Babies require life-saving operations and years of expert hospital treatment and aftercare. Congenital heart disease is the number one cause of death from birth defects in the first year of life.
Q So, what does the research study aim to achieve?
A Next year, the Ulster University and cardiologists at the Royal Belfast Hospital for Sick Children hope to recruit 400 babies born over the next three years with congenital heart disease and 800 healthy babies and their parents to take part in the study to determine what common factors could lead to the disease and inform preventative pre-natal care. The study has the potential to influence global understanding of the reasons behind congenital heart disease. The research will be led by Professor Helen Dolk and her team, working in collaboration with Dr Frank Casey and Dr Brian Craig from the Clark Clinic in the Royal.
Q What is known about the cause of congenital heart disease?
A It is largely unknown why babies develop heart problems in the womb, that is what the study is hoping to investigate.
Among factors which could be looked at is whether illnesses a mother suffers while pregnant, such as German measles, flu or diabetes, play a part.
It is hoped that by understanding what might cause the condition, it could become a thing of the past.
Q What's does your Baby Heart Appeal aim to do?
A The appeal is run by the Northern Ireland Chest, Heart and Stroke charity. Through your generosity, we aim to enlist 800 supporters to each donate around £25 by Christmas Eve. This will cover research costs for 110 babies in Northern Ireland. You can donate in four ways – online, by phone, by text or by our coupon.
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