A miracle Edinburgh baby who was given just one day to live has reached his first birthday despite the odds. Little Hector was born at just 23 weeks and his parents were unable to see him for the first 40 hours due to Covid restrictions.
Marie Clare Tully, 41, has told of the incredible story and how she and her husband focus on each day with their son as they do not know how his condition will affect his life in the future.
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So far the bundle of joy has spent 259 nights of his life in the hospital after being born with severe complications due to his prematurity.
Little Hector was diagnosed with hydrocephalus, which means spinal fluid cannot flow around the body, due to a bleed on his brain. The one-year-old also has chronic lung disease, retinopathy, a feeding tube and centralised sleep apnoea.
He has had 15 operations so far despite only being a year old and has been rushed to A&E over 25 times.
It was not until April 2022 that he was allowed to go home - more than five months after he was born and he is still a regular patient at the Royal Hospital for Children and Young People.
Speaking to BBC Scotland the brave mum said: "His case is unique as he has extra complications due to his prematurity. He has also been very unlucky as the shunt inside his head keeps blocking.
"I saw him when he was born and gave him a kiss and then he was wrapped in plastic to keep him warm and rushed to the resuscitation department.
"I felt devastation at not being able to be with him. I was heartbroken that we couldn't be with him in those crucial early moments."
Little Hector was born on 12 November 2021 and due to Covid restrictions had to be put into isolation until he tested negative for the virus. Marie Clare and his father, Angus, were not allowed to visit their son for the first 40 hours of his life.
Despite spending a long time in the hospital - sometimes not knowing if Hector would survive, Marie Claire said: "I feel like the luckiest person, he's so fun, he brings so much joy to so many people.
"When I heard he was going to survive, I let out a wail that came from the bottom of my soul, I can't articulate it, it was the greatest feeling in the world.
"There was still a long way to go but to know the team thought he was going to survive was so great."]
The damage Hector suffered to his brain from hydrocephalus can cause a wide range of symptoms, including headaches, being sick, blurred vision and difficulty walking which will affect him for the rest of his life.
She continued: "I'm so proud of him. He is a miracle, he is beyond a miracle and I am so proud of him.
"It is because of everyone's positive prayers that he has been pulled through and we have made sure to surround him with all the love and joy and hope so that he feels absolutely adored.
"We make sure every day is great for him," she said. The mum added that she was blown away by the support from the staff at the hospital.
She explained: "Everybody at the hospital is behind Hector, the nurses, domestics, clerks, doctors, physios, it's like one big family.
"Some days have been so difficult. He's had drains coming out of his head and I've not been allowed to lift him but the care he has had at the hospital has been incredible."
The couple had lost a baby during pregnancy three years before so Hector's pregnancy had been high risk.
Marie Clare said: "When I went to the hospital with sharp pains doctors told me I was in labour. I said 'no' and tried to hide the labour pains from them as I desperately didn't want him to arrive early.
"They said there was a very slim chance of survival under 23 weeks. I looked at my watch and it was one minute to midnight and so I said in one minute I will have reached 23 weeks."
He was born one hour 14 mins later but the couple has now celebrated his first birthday despite the odds stacked against the little one.
Finally, the mum reflected on celebrating the special milestone they weren't sure they would reach and said: "He was born at 01:14 so we stood at his cot at that exact time one year later and had a quiet moment just so grateful he is here.
"We reflected on how he had made it and how we were the luckiest people. It's been the best year of my life."
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Pippa Johnston, director at Edinburgh Children's Hospital Charity, said: "Hector and his family are inspirational and have shown so much strength through an unimaginably difficult year.
"Hector is truly a hero in every sense of the word. Sadly the reality is that some families have to be in hospital over Christmas.
"While we can't take away their pain, we can deliver happiness. Together with the NHS, we work hard to make sure families like Hector's don't miss out on the magic of the festive season."
About 4,000 babies are born prematurely in Scotland every year but only a small percentage is before 28 weeks.
Medical advances mean babies born as early as 22 weeks can be saved but statistics show only four in every 10 born at 23 weeks survive.
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