Belfast Telegraph readers have been praised for their overwhelming response to the first 24 hours of our Christmas Appeal — which aims to help babies battling heart disease.
The Northern Ireland Chest, Heart and Stroke charity said it was delighted after donations to its Help Our Babies Hearts initiative came in “thick and fast”.
We launched our Christmas fundraising drive yesterday by highlighting the vital work of the appeal, which is aiming to make congenital heart conditions a thing of the past.
The charity said already, a range of supporters — local businesses, community groups, families and individuals — have been donating from all across the country, online and through the phone.
Running until Christmas Eve, 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 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.
But no matter what the amount donated, it will help make a difference and will be welcomed.
Andrew Dougal, chief executive Officer of NI Chest Heart & Stroke, said the response to the appeal has already been overwhelming.
“We have been delighted with the support from the Belfast Tele
graph and the paper’s commitment to raising awareness of the Baby Hearts Study and helping to generate the funds needed,” he said.
“Telegraph readers have embraced the stories of baby Joe, Chloe and Grace, and have been generous in donating.”
Congenital heart disease is the most common birth defect in children born in Northern Ireland with, on average, 250 children per year affected.
Roughly one third of these children will require open heart surgery or other interventional procedures.
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 Belfast Hospital for Sick Children.
Our daughter is living a full life, others deserve the same chance
A couple who had two babies born with heart conditions — with only one surviving — have spoken of the importance of vital research into finding the cause of congenital heart defects in babies.
Tom (78) and Anne Johnston (77) from Donaghadee, Co Down, decided to start a family in the 1950s, but were struck by tragedy.
Their first baby died before birth from a brain condition. Their second, Kay, was born with the congenital heart complaint Fallot’s Tetralogy.
Tommy, their fourth child, was born with a hole in his heart and died at just four months.
They have three other children unaffected by congenital heart conditions. And the couple were told the conditions Kay and Tommy were born with were a tragic coincidence.
Kay, now 53, underwent a heart transplant aged 36 and said she feels lucky to have the quality of life she has now.
“It is not good to hear the words when you are 36 that you have had a good run,” she said.
“My mum and dad did go through tough times. I knew they worried about me. They have always been there for me.”
Kay’s heart condition was not picked up until she was three-years-old.
The family’s doctor, purely by chance, noticed that her skin was blue when she did anything strenuous.
This was before antenatal scans and complex heart surgery were common.
After a long series of consultations with heart specialists in Belfast and London she was diagnosed with Fallot’s Tetralogy.
It is a condition in which at least four heart defects are present at the same time. At age 11, having sat her second 11-plus test the previous day, Kay was admitted to the Royal Victoria Hospital for open heart surgery.
“It was a terrible time in Belfast and my mum and dad did everything to be with me,” she said.
With the help of a pacemaker, Kay went on to university and became a teacher. However, by her mid-thirties her health deteriorated.
“It was at this point that she had to consider seriously the possibility of a heart transplant,” Tom said.
Anne and Kay travelled to Newcastle upon Tyne so that she could be assessed to see if she would be a suitable candidate for a new heart.
She was placed on the transplant waiting list just as her heart was failing.
“It felt like we had won the pools when I was told I would be suitable for a heart transplant,” she said.
“I was on a waiting list in December 1997 and then the phone call came in July 1998, so I was on the list for seven months altogether.
The surgery, which was carried out in Newcastle-upon-Tyne, took 11 hours.
Tom said he stared at the door of the operating theatre all that time while Anne waited at home for news.
Kay, who is a teacher at Bloomfield Collegiate in Belfast, survived and has continued to lead a full and active life.
“It used to take me an hour and a half to get up in the morning. There was no quality of life.”
But Kay said she felt immediately better after the transplant.
“I know I was very ill when I went into the hospital and the doctors looked at me and thought, ‘this is her last chance or only chance’.
“I just remember becoming conscious and thinking wow. The colours were brighter, everything was more intense.
“I remember looking in the mirror and thinking it was like somebody had turned the colour up. My skin was like the proper pinky colour and my lips were pink and my eyes were white. It was amazing.
“My parents have been fantastic to me, I’ve been lucky they have been there.”
Her parents have nothing but praise for the health service.
But even with the advances in treatment and surgery, they don’t want to see anyone else having to cope with a gravely ill baby and are supporting the Baby Hearts research project.
Kay said: “Women can often feel guilty that they have had a baby with congenital heart disease and anything that could alleviate that would be good.
“Anything that could give actual reasons and show it is nobody’s fault and if there is a way of preventing it in the same way that folic acid can help prevent spina bifida.”
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