All one Aberdeen family wanted for Christmas was to have their little boy home from hospital. Their wish has come true – now they want to help others by highlighting the need for a specialist scanner which could save the lives of Scottish children born with heart defects
Gillian and Steve Munro have received an early Christmas present, a precious gift which at one time, they feared they’d never get to enjoy.
It’s their gorgeous baby son, Jack.
Jack was born with two holes in his heart and much of his little life has been spent being cared for in hospitals in Aberdeen and Glasgow. But after undergoing six hours of major surgery at the Royal Hospital for Sick Children, he’s been allowed home in time for his first Christmas.
Gillian, who formerly worked for Total in Aberdeen said: “Throughout my pregnancy scans showed a possible problem with Jack’s legs which seemed too small. As my due date got closer they said his legs were fine but they could see a problem with his tummy which was too small. So I was taken into hospital for a few days, given steroid injections and he was born by C-section a few days later, but four weeks early.
“As soon as he was born they spotted he had a heart murmur but they allowed us to go home,” said Gillian who lives in Mastrick, Aberdeen.
Despite feeding well, within a few weeks Jack began breathing really fast and stopped putting on weight so was admitted to hospital in Aberdeen for a week while experts carried out tests.
Gillian, 44, who stayed with him throughout, said: “It was absolutely horrendous as he was getting smaller and smaller, almost shrinking before my eyes. He couldn’t even manage a teaspoon of milk without falling asleep so had to have a nasogastric feeding tube inserted into his nose which then went down the back of his throat and into his tummy in order to keep him alive.”
Nearly one in 100 babies in Scotland are born with heart defects. All children in Scotland with heart conditions are treated at the Glasgow hospital – with around 35 children scanned by the cardiac team each day.
“The doctors in Aberdeen were great and knew something was wrong with Jack’s heart but they didn’t have the equipment or specialist expertise available so Jack was moved to Yorkhill Hospital in Glasgow. He was transferred via neo-natal ambulance. That was pretty horrible watching him getting transferred into a space bubble (special incubator) while we followed the ambulance in the car.
“I was really scared and anxious and just wanted to get there,” said Gillian.
Heart specialist doctors saw six-week-old Jack as soon as he arrived at the hospital and quickly diagnosed the problem – he had two large holes in his heart.
“I was just beside myself with worry but then I asked the consultant if Jack was going to be okay. Doctors aren’t allowed to lie so when he told me he was going to be fine I was relieved but knew we had a long road to travel first.”
Gillian described Jack as being in a sorry state when he arrived in Glasgow as he weighed less than five and a half pounds. Before the surgeons could operate he had to reach a desired target weight of four kg, around eight and a half pounds. That meant being fed high calorific milk every hour via feeding tubes, but even then his little tummy struggled to cope with the quantities and it took three long months before he could undergo the six hours of surgery required to repair his wee heart.
The operation was a success and Jack has been allowed home where this tough wee fighter spends his days being cuddled by his family and playing with his favourite, brightly coloured, firefly toy.
He’s still not out of the woods though and is at the moment continuing to be fed by a nasogastric tube as he’s lost the ability to take milk from a bottle. He’ll need to have regular check-ups for his heart throughout his life but all being well, he won’t face further operations.
“We didn’t think we’d get him home in time for Christmas and consider ourselves very lucky,” said Gillian. “When Jack was born I didn’t expect to have to spend months in hospital – nobody does.
“There are a lot of parents out there whose children won’t get home in time for Christmas and I just wish there were more specialist staff and equipment available to children in Scotland which is why I’m backing the Christmas appeal for the Yorkhill Children’s Charity.”
The charity, working with NHS Greater Glasgow and Clyde, is aiming to raise £150,000 to fund the UK’s first 4D heart scanner at the Royal Hospital for Children which can even help diagnose heart conditions in unborn babies. The Royal Hospital for Children (RHC) also the national provider of paediatric cardiology services in Scotland.
The scanner would be one of three at the RHC and the first of their kind in the UK. It can diagnose and treat heart conditions more quickly and effectively, even in unborn babies.
Shona Cardle, chief executive, Yorkhill Children’s Charity, said: “Almost half of under-25s in Scotland who die from cardiovascular-related issues are less than one year old. A heart defect is the most common problem a baby can be born with and we want to help families affected by this and give patients the best possible chance to win their battle.
“This state-of-the-art scanner will make a dramatic difference to the lives of patients at the Royal Hospital for Children. We work in partnership with the NHS – which is funding two additional scanners for the hospital – and deliver enhancements to the amazing service they deliver for young patients.”
The scanners will be used in three areas of the hospital – intensive care, the catheter laboratory and the main cardiology department. They show the heart in 4D (a moving 3D image) which allows medical staff to see chambers, valves, vessels and other intricate structures with life-like clarity. This can help to diagnose heart conditions in babies and children more accurately, allow for quicker action which could save lives and help staff prepare the best possible treatment plan.
And according to Dr Stuart Lilley, a cardiologist at the Royal Hospital for Children, the new scanners have a major impact.
He said: “The new equipment is a completely redesigned digital form of ultrasound capable of imaging even the smallest of hearts. These hearts may be no longer than a centimetre and a half long and we have to image everything inside that.
“The scanners will make a huge difference. With them, we can be certain of the diagnosis and that is what the surgeon needs so there are no surprises when they start the procedure.”
For Yorkhill Children’s Charity, this year’s appeal carries a special significance. Shona Cardle said: “This is our first Christmas Appeal since we made the move from Yorkhill Hospital to our new home at the Royal Hospital for Children. And while our home has changed, our mission remains the same – to provide the support that benefits Scotland’s families.”
For further details of Yorkhill’s Little Hearts charity appeal visit www.yorkhill.org or call 0141 212 8750.