BABY Carson’s ‘fighting spirit’ has amazed his family – now he has to make it through the winter without catching a cold for a life-saving operation.
Carson Hartley wasn’t breathing when he was born and he had a heart attack at three months old.
But he has amazed his parents with his 'fighting spirit' which they say has been an inspiration.
Now, aside from the chances of catching a virus his lungs cannot handle, his lungs must grow and develop if he is to be considered for life saving heart surgery in the Spring.
Mum Kirsty Harris said: “They have told us that should he catch pneumonia, bronchitis or even a cold he may not make it.
"There’s nothing they can do, except breathe for him and hopefully the lungs will develop."
Oswaldtwistle couple Kirsty, 30, and Damian Hartley, 19, and have endured a 'roller coaster of emotions', being told on numerous occasions that he may not survive the night.
Carson, who is undergoing treatment at Alder Hey, was unable to feed initially due to a cleft palate and a reflux problem which saw milk enter his lungs.
Now he has been diagnosed with a chronic lung condition which means he relies on machines to breathe for him and suffers from a hole in his heart and unformed arteries.
His condition, Tetralogy of Fallot, is a congenital heart defect which sees the blood starved of oxygen, known as ‘blue baby syndrome’.
Kirsty went into labour and gave birth three months early in February while being treated at Royal Blackburn Hospital for a water infection.
While there the baby’s placenta detached.
She said: “If I hadn’t been in hospital, both of us would have died. I lost a litre of blood and Carson was born not breathing. They had to put a mask on him straightaway and take him off to Intensive Care.
“We couldn’t see him for 12 hours and when we did, the sight of him was heartbreaking. You think: ‘Why him? Why a little baby?”
Carson was transferred to children’s hospital Alder Hey in Liverpool, where he suffered a cardiac arrest when he was just three months old.
In the first of four operations to keep him alive, doctor’s inserted a ‘shunt’ or artificial valve to improve blood flow, but this is just a temporary measure.
Kirsty said: “So many nights we have sat up thinking it’s our last night with him.
"What he’s had to go through is horrible, you would do anything to put yourself in his place. In spite of everything he kept a smile on his face”.
Carson’s weight has improved dramatically since doctors performed an operation, known as fundoplication which saw the top of his stomach sewn up to prevent his regurgating food.
He also has ‘pure nutrition’ injected into a tube in his heart so fats, salts and sugars enter his blood stream directly.
A fourth operation also a tube inserted which leads directly to his stomach, so he can be safely fed.
Thanks to these efforts, Carson can take in 15ml of milk an hour, but needs to be comsuming nearer to 50.
His intake is being increased little by little in an attempt to strengthen him for the winter ahead.
Kirsty explained the operation he would have if his lungs developed: "It will patch the hole in his heart and widen his arteries.
"They have told us the shunt in his heart is only temporary and if he can’t have the operation, they will instead focus on making him comfortable and letting nature take its course.”
Kirsty is currently staying at Alder Hey’s Ronald McDonald House, to be near her son while Damian cares for Kirsty’s four other children Chloe, 13, Lewis, ten, Ethan, nine and Leyton, three at their home.
Kirsty said: “Damian is doing an amazing job as this is very hard on us as a family. He can’t see Carson as much as he would like and I want to be at home.
“I went back recently and sat in Carson’s nursery. I just want to bring him home and have everyone together.
"For now, though, the Ronald McDonald house is a godsend because I can be near him.”
The Ronald McDonald house is maintained purely by charitable donations and Carson’s family are hoping to raise £1000 towards its upkeep.
They are hoping to host a fundraiser in October and ask for anyone who would like to donate to contact Kirsty on 0754 681 9167.
To donate directly to the charity contact 0151 252 5866 or visit www.machouse.org.uk.
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