A boy who was born with half a heart and had three open surgeries within the first three months of his life has miraculously overcome a rare condition to start school.
Brave Kaleb Lewis was given almost no chance of survival in the womb and his parents Kirsty and Shaun say they never dreamed of being able to take him home from hospital.
Within 12 months of entering the world Kaleb – now four-years-old – had battled a number of life-threatening illnesses resulting in pneumonia, a collapsed lung and nine major operations.
His rare heart condition deteriorated so drastically after six months that Kirsty, 37, and Shaun, 29, were given the heartbreaking news their son had just hours to live.
The couple, from Hull, East Yorks., are now pinching themselves after watching him pull on his uniform and happily trot off to primary school for the first time earlier this month.
Shaun, who gave up his job as a builder to care for Kaleb, said: “When I saw him in his uniform, I had to pinch myself.
“I just kept thinking to myself, ‘how the hell did we get here?’ It’s a long way from that first day when he was born in hospital.
“Never in our wildest dreams did we think we’d see him start school or go on holiday.
“He has proved to us just how strong he is and now we know he can do anything.
“He’s such a miracle. He loves life and has taught us to appreciate every moment. We’re really just so lucky.”
During Kirsty’s pregnancy doctors diagnosed the baby with hypoplastic left heart syndrome (HLHS), a birth defect that affects normal blood flow through the heart.
The devastated mum-of-three was warned he might not survive the pregnancy and, if he did, he may not survive the birth or subsequent surgery needed to help him stay alive.
Kaleb’s odds of survival were just one in five.
“I didn’t prepare to bring him home,” Kirsty, said.
“But I knew I couldn’t terminate the pregnancy. He was so active when he was in my tummy I knew I needed to give him a chance to show just how strong he was.”
Kaleb was born at Birmingham Children’s Hospital in October 2014 and surgeons conducted emergency open heart surgery at within a matter of minutes.
He spent the first few months of his life in a high dependency unit under the constant watchful eye of specialists.
“Kaleb was in and out of hospital for the first year of his life,” said Kirsty, who gave up her career as a hairdresser to care for Kaleb full-time.
“He had his second open heart surgery operation when he was just three weeks old, and his third open heart surgery operation when he was three and a half months old.
“When he was just six months old, Kaleb fell really ill and we were told by the doctors and nurses that he just hours to live and that ‘maybe it was time to let him go’.
“We were devastated but we couldn’t give up on him, he’d fought so hard already.”
Due to his condition Kirsty and Shaun were given the option to take part in a a world-leading study using wireless technology to predict deterioration in seriously ill children.
The project, called Real-Time Adaptive & Predictive Indicator of Deterioration (RAPID), was developed by UK-based company Isansys Lifecare.
The groundbreaking technology enabled doctors to continuously monitor Kaleb’s vital signs and automatically predict if he was getting poorly.
If his health did deteriorate the system would provide a warning to nursing staff so they could act on it immediately.
Kirsty, who has two other children, Kodi, 15, and Korban, eight, said Kaleb’s condition was high risk for 11 months and that the family never left his side.
“Every moment in the first year of Kaleb’s life it was a matter of life or death,” said Kirsty.
In the wake of Kaleb’s recovery his family have set up a charity called Kaleb’s Cause to spread awareness of hypoplastic left heart syndrome.
More information can be found here: https://m.facebook.com/KalebsCause