SITTING pretty in her bright blue top, Caitlin Hartley’s eyes sparkle as her favourite video suddenly bursts on to the television.
She might not perfectly match Gangnam Style rapper Psy’s bizarre galloping dance moves, but at a mere 17 months old she jumps up, happy to bounce along to the beat, pushing back her wispy strawberry blonde hair and wiggling on wobbly legs in front of the screen.
It’s only when the neckline of her top slips down a shade that the scar becomes obvious – a pale purple line left behind by the surgeon’s knife after he cut into her chest to reach her tiny walnut-sized heart.
Then, with painstaking accuracy, he performed one of the most intricate lifesaving operations imaginable on the most vulnerable of little patients.
Born with a rare, congenital, heart defect, Caitlin faced surviving only a few months without vital surgery to repair the abnormality before her heart and respiratory system began to fail.
It was hoped the seven-hour operation when she was just four weeks old would be enough to dramatically improve her health for years to come. But one problem after the next has meant that even now Caitlin’s tiny heart is still battling to keep her alive.
For though she might look the picture of health, it’s feared that despite further open-heart surgery last summer and two four-hour long keyhole procedures, the pressure on her heart caused by weak and narrow arteries means it could eventually simply “burn out”, leaving her at risk of cardiac failure.
“We really don’t know what the future holds,” says mum Marie, flicking a switch so Caitlin can hear Gangnam Style one more time before her afternoon nap. “We’ve learned just to deal with what is immediately in front of us and not to worry about what is further down the line.
“New techniques are being developed all the time, we don’t know what medicine will be doing in 20 or 30 years, so we just have to wait and see.”
Caitlin had seemed healthy enough when she was born in September 2011 at the ERI after a trouble-free pregnancy, tipping the baby scales at a bouncing 8lb and 5oz. But within hours it seemed something was not quite right. “The doctor said there was a bit of a heart murmur but that a lot of babies can have that, so not to be too worried,” recalls Marie, 32. “She was feeding well and seemed healthy enough, and I just wanted to get her home.”
But next day a scan and tests revealed problems. Full-time mum Marie and Steve, 35, a press manager at Standard Life, were warned it looked likely she had a congenital heart defect called truncus arteriosus, a rare condition affecting just one in 10,000 babies which means there was just a single artery serving her heart instead of two.
“It was when we were halfway back to the neonatal ward that it hit us. We were in tears,” recalls Marie.
The couple, of Ashley Place in Leith, learned the condition affected the flow of blood and was putting pressure on their daughter’s respiratory system. Without surgery, Caitlin would probably only have survived until she was three months old.
“It’s when you think of her heart just being the size of a walnut and a surgeon then working on the arteries that go to that tiny heart that it becomes so incredible,” says Marie. “And her surgeon turned out to be a big man with large hands, so it seemed impossible that he could do what had to be done.”
Caitlin underwent open-heart surgery at the Royal Hospital for Sick Children at Yorkhill in Glasgow, where the Scottish Congenital Cardiac Service is based. Once under the anaesthetic, the surgeon opened her chest to reveal just one artery across the top two chambers of her heart instead of two, and a hole in the wall which would normally separate the two lower chambers.
Throughout seven nerve-wracking hours, he created an artery using a vein taken from a cow and fitted a new heart valve. Caitlin emerged, desperately fragile behind a mass of tubes and hooked to beeping machines, her tiny head swathed in a bright pink roll of bandage to help keep vital equipment in place.
“Still we thought that was it and all we had to do was wait for her scan at six weeks and everything would be fine,” recalls Marie.
However, follow-up checks revealed scars on her already narrow arteries – affecting the flow of blood around her heart. Caitlin returned to Yorkhill in February last year for an angioplasty, a four-hour keyhole surgery procedure in which a balloon is inserted into the artery via a vein in the groin. When that didn’t appear immediately effective, she was fitted with a stent.
But in April last year came further bad news when a check-up revealed that had failed to improve Caitlin’s condition. “The staff at Yorkhill were great. They were concerned but they made sure we didn’t worry too much. They just said the problem was more aggressive than they thought,” says Marie. “The option was open-heart surgery to make the arteries physically bigger by cutting the roof of the artery off and inserting a graft.”
Sadly that seven-hour long procedure in August also turned out to be unsuccessful at solving little Caitlin’s problems. And a further four-hour angioplasty procedure in November during which three stents were inserted has also failed to make a dramatic impact, raising the prospect of further open heart surgery to come.
Watching the Yorkhill staff’s determination to help Caitlin made the couple decide to give something back. Now Steve has embarked on a mammoth fundraising effort – to spend 2013 notching up 2013km of running. “There’s only so many cupcakes you can hand in,” says Steve, who regularly hits the streets at 5.30am to ensure he gets enough miles under his belt. “Raising some money is our way of showing our appreciation.”
As for Caitlin, the couple have been told to look for warning signs of cardiac failure. “Caitlin’s small just now and they can’t keep going at her with no signs of improvement. So we’re at a dead end until she gets bigger,” says Marie.
“We’ve been told she is putting pressure on her heart to get blood from the heart to the lung. In the left ventricle, the pressure is three times higher than it should be. If it’s like that for a long time, her heart will burn out. The fear is that she will have a cardiac arrest because her heart is working that hard.
“But we can’t explain any of that to her,” adds Marie, smiling as Caitlin wiggles in time to Gangnam Style. “She’s just a normal toddler who goes at full speed all the time.”
In the womb
TRUNCUS arteriosus is a rare heart defect which develops in the womb and can be fatal within weeks of birth.
In babies with truncus arteriosus, the heart chambers and the single blood vessel leaving the organ are not properly formed.
The result is that oxygen-poor blood that should go to the lungs and oxygen-rich blood destined for the rest of the body are mixed together, causing serious circulatory and respiratory problems. Often, the valve controlling blood flow is defective too.
Fundraiser on the run for hospital
DAD Steve Hartley has set himself a marathon challenge to help thank Glasgow’s Yorkhill hospital for caring for daughter Caitlin – running 2013km this year, the equivalent of 1250 miles.
He plans to pound the streets around his Leith flat and notch up the miles at half marathons and 10k runs throughout the year. And he is hoping to bring his impressive feat to a dramatic conclusion – by running all the way from Edinburgh to Glasgow. Already he’s managed to complete 151km and raised £1940 for Yorkhill Children’s Foundation. His employer, Standard Life, has agreed to match fundraising for the charity up to a total of £10,000.
Steve says: “Marie and I cannot express in words what the surgeons, doctors and nurses at Yorkhill mean to us.”
Debbi Jennings, of Yorkhill Children’s Foundation, paid tribute to the couple. She says: “They are really inspirational people.”
n To sponsor Steve, go to http://uk.virginmoneygiving.com/2013in2013 and follow a blog of his progress on http://2013-in-2013.tumblr.com