Laura & Callum McColl
The snapshot showing two brothers smiling impishly for the camera is one which is replicated in thousands of homes around the country.
To the outside world the toddler on the right appears normal, a playful little boy. But to his inner circle of family and friends Callum McColl has battled many adversities in his young life and has many more to face in the future. Two-year-old Callum has been diagnosed with Shone's Syndrome, a complex disorder which means he has multiple abnormalities with the left side of his heart.
Callum has the following -
Aortic stenosis - Hypoplastic arch - Hypertension
Mitral valve - Stenosis - Ventricular septal defect -
Shone's Syndrome involves multiple levels of left-sided cardiac obstructions including supramitral ring, mitral stenosis, subaortic stenosis, aortic stenosis and coarctation, and can demonstrate active progression.Callum required open-heart surgery when he was just 2 weeks old and he will have to undergo a series of further operations as he grows up.
Now his mum, Laura McColl, of Oldbury Way, Fareham, has begun a personal crusade to raise awareness of congenital heart disease/defects and try to link up with other parents of children with Shone's Syndrome and other child heart defects:"If you met Callum you wouldn't automatically know there was something seriously wrong with him - that's one of the scariest things for us, not being able to see what's going on inside our son and not knowing how quickly it will progressively go downhill," said Laura, "research is moving forward, but not fast enough. In my opinion there's not enough awareness of congenital heart defects / disease (CHD), and consequently not enough funding."
Callum was born on April 5th, 2006. He was one week overdue and being Laura's second child she decided on a home birth. "Everything seemed to go OK. He seemed a bit groggy and his breathing didn't sound quite right, but the midwife assured me that everything was all right and I bowed to her judgement," said Laura.
"The next day his breathing seemed much worse and Callum was admitted to hospital where they initially treated him for a chest infection, we stayed in for 1 week so he could have antibiotics through a canular but while we were there they also picked up a heart murmur, which, in my opinion, wasn't properly investigated.
"We were sent home the very next day and Callum wouldn't feed and he was very sick. Then he went blue and had a cardiac crash in our arms and was rushed to the Wessex Cardiac Centre at Southampton General Hospital and had major open heart surgery. His surgeon was Mr Haw, who I now refer to as The Miracle Man," said Laura. "He has such big hands and works with such precision inside such tiny chests - it's just amazing."
Callum was to spend over three months in hospital, while Laura and her husband Robin, who had been given shore leave from the Royal Navy, tried to take in the enormity of his heart problems and the shock of not knowing through the whole of Laura's pregnancy.
Early in 2007 after he had keyhole cardiac surgery, we were given the devastating news that Callum's heart had stopped growing and to prepare ourselves for the fact that he may not see his first birthday. Both Laura & Robin didn't know what to do or how much more bad news they could take, but a routine check-up in March 2007 revealed that his heart had amazingly restarted growing, although he will need further corrective surgery in the future.
Laura (27), who works as a catalogue distributor/team builder, also has an older son Brandon (5) who attends the Nurture Assessment Unit in Fareham due to a language disorder.
"Callum has proved to us that he's a little fighter & very strong," Laura said. "There's no way I'm ever going to give up on him. I'm trying to carry out my own research into what his future chances are. I'm trying to gather as much information as I can about his multiple heart problems, but the resources are very limited," said Laura, who has been using the social networking website Facebook to track down other parents with experience of Shone's Syndrome & many other CHDs.
Laura said that most child heart defects are never really "cured" and are very different from typical heart disease.
"Because there is not great public awareness of child heart defects, there is not the same degree of understanding of the pain our families face, " said Laura. "The fears and the overwhelming desire for "normality" for our children, and the yearning we have for a "fix" or cure that has not yet been discovered."
Laura has also raised about £300 for Wessex Heartbeat during the summer with a stall at Stubbington Faye and over £800 selling merchandise on our behalf. Although disappointed at what she felt was a very small amount of money to help research, she's a determined lady & will continue to raise awareness as well as funds for research.
About Shone's Syndrome
Shone's Syndrome is a form of heart disease that has two main features. Firstly, there are multiple problems with the left side of the heart, which receives blood from the lungs and pumps it to the body. The valves and passageways are often too small or blocked. Secondly, the abnormal areas on the left side get worse over time. This second aspect of Shone's Syndrome makes it very different from most other types of congenital heart disease, which may be equally severe at birth, but do not progress over time.
FACTFILE ON CONGENITAL HEART DISEASE
Congenital heart disease (CHD) is an abnormality of the heart that has been present from birth.
- It occurs on average, in 1 child in every 145 births, or about 5,000 babies each year in the UK
- There are at least 75 distinct forms of CHD, ranging from very mild, requiring little or no surgery, to more serious, where babies may require several operations throughout life.
- Before the 1960s, when open-heart surgery wasn't carried out on children, many who had congenital heart disease died in infancy
- There are at least 150,000 adults with congenital heart disease in the UK.
- Celebrities who have undergone surgery to correct congenital heart disease include Pompey's Nigerian-born striker, Kanu and Terminator actor and politician, Arnold Schwarzenegger.
