Mum speaks out against 'trauma' of young heart patients being treated in England
Julie Kenwell • Published 8 Sep 2012 09:28
Alfie Keys and his mum Jennifer.
ACCORDING to Bellanaleck mum, Jennifer Keys, if her 19-month-old son Alfie could speak, he would ask our health service not to "give up" on the future of paediatric heart surgery in Belfast.
With a complex heart condition from birth, Alfie had to undergo open heart surgery at just four days old in Birmingham Hospital.
His parents had to watch helplessly as he was taken from the Royal Victoria Hospital at just 19 hours old, to be transferred there for his life-saving operation.
All of Alfie's four operations to date have been carried out in Birmingham due to the severity of his condition.
But if a proposal to close down the local Heart Services in Belfast goes ahead, all families across the Province will be faced with the same ordeal.
Earlier this year a UK-wide review said that although the service at the Royal Belfast Hospital for Sick Children is safe, it is not sustainable.
Its findings could mean that children would have to travel to England for future treatment.
A lobby group has since been set up with plans to meet at 10 different locations before Christmas in order to drum up support to ensure services remain in place.
One of the locations will be the Lakeland Forum in Enniskillen.
"These babies have fought so hard to survive, they deserve the best," says Jennifer, "Alfie never gave up, so we can't give up on this fight either.
"You don't realise how many children are affected with heart disease until you are in that world yourself."
Things are a lot brighter for Alfie, his older brother, Alex, and parents, Jennifer and Nigel now.
Due to undergo his fifth round of surgery between the age of three and five, he has been given a far better prognosis than when he was first born.
The first signs that there was something wrong with Alfie's heart became apparent at Jennifer's 20 week pregnancy scan.
"The nurse at the Erne Hospital couldn't find part of his heartbeat -- it's all thanks to her that we were prepared," she says.
"I met that same nurse in the Erne some time afterwards. I don't even know her name but she had such a huge impact on Alfie's life, and I told her exactly that."
Although none of her subsequent scans were conclusive, the decision was taken that Alfie would be born in the Royal.
"When I first heard I would have to go up to Belfast for the birth I thought that would be hard. I laugh at that now because it's nothing compared to what we went through.
"For patients who can have treatment here, to have that taken away and to be put through the trauma of having to travel to England, to me it's just pointless."
When Alfie was six hours old his parents were told there was nothing staff at the Royal could do for him.
"It was awful ringing home to tell people the news," Jennifer recalls, "We were told to get him Christened so we did. We knew he would be transferred the next day."
Alfie was transferred by air ambulance at 7am the following morning.
"It was so hard to see him being taken away from us in the Royal when he was only a few hours old," she says, "We didn't know what was going to happen, we were in bits. We were standing in the ward while happy pregnant women were coming and going. I couldn't help but feel upset. I was just devastated. We had to come straight home and get Alex, throw some clothes in a bag and get our passports to head out after him.
"We were living on our nerves.
"I just wanted to see him again and see that he was safe in Birmingham Hospital. I was so anxious, but looking back, I needn't have been -- we walked into the hospital and there he was, asleep!"
The family stayed at Ronald McDonald's housing accommodation close by, free of charge.
"It was a lifeline for us," says Jennifer, "You are financially drained as it is because you are not working and you have no money coming in. But the accommodation is beautiful and it is only three minute's walk to the hospital.
"It's hard to settle in the first time you are over there. It's very traumatic not being in your own area. At times like that family and friends are everything to you but they are across the water."
Alfie receives regular check-ups in Belfast now, but any future surgery for him will take place in Birmingham.
Knowing only to well the full horror of having a young child undergoing surgery away from home, Jennifer is adamant that heart services cannot be taken away from Belfast.
"We have some very good points in our argument as to why it should stay here -- it's just trying to get those points across," she says, "The best we could hope for now is an all-Ireland network with Our Lady's Hospital in Dublin.
"The report said the service in Belfast was safe so why change it and put so many families through what we went through?"
This article appeared in Impartial Reporter 07 Sep 12