A series of treatments for chronic heart and lung problems have robbed a ten-month-old boy of the chance to speak.
Carson Hartley has had four operations for his condition, but they have destroyed his throat and voicebox, meaning he will never have a voice.
The child was born with 'blue baby syndrome' which starves the brain of oxygen, and has also survived a heart attack when aged only three months.
Surgery for chronic lung and heart problems have left Carson Hartley without a voice
Doctors have since carried out the insertion of a temporary 'shunt' or artificial valve to improve blood flow and say they must now act to stabilise his lungs before undertaking a further lifesaving heart operation in the spring.
Mother Kirsty Harris from Oswaldtwistle, Lancashire, spent the New Year at his hospital bedside before doctors told her and father Damien Hartley the news that their son would never speak.
'We have been through a lot and have had lots of bad news but when they said I would never hear him speak, that he would never have a voice, I just burst into tears,' said Kirsty, 30
'Compared to surviving, having a voice sounds like it is a little thing, but it isn't,' she said.
'He will have to learn a different way of communicating and we will have to learn how to communicate with him.
'They had to put him straight on a ventilator when he was born not breathing and he was on it so long that has damaged his voicebox and airways. That has been the price for saving his life.
'His airway is tiny. The surgeon put a camera down there and said it was the smallest he had seen in 17 years. Unless they do the tracheotomy, it will close over as he grows.
'Carson is battling on with his whole family behind him. He is our special little fighter.'
Carson's mother Kirsty spent the New Year at his bedside as doctors prepare to perform lifesaving surgery in the spring
Carson is being treated at the Alder Hey Children's Hospital, Liverpool, and his whole family were able to spend Christmas day in his hospital room.
His condition, known as Tetralogy of Fallot, is a congenital heart defect which sees the blood starved of oxygen. He also suffers from a hole in his heart and unformed arteries.
His family had been told he must survive the winter without catching a cold to have a chance at a life saving operation but have since watched him battle through bronchitis and numerous infections.
The tracheotomy operation could see Carson reliant upon a ventilator for the rest of his life, but doctors will attempt to wean him from it after three months.
Kirsty continued: 'We don't know what effect it will have, but if they don't manage to stabilise his lungs, they won't consider him for the heart operation. Without the heart operation he won't survive.
'They only say they will consider him for it, we haven't been given any guarantees'.