Share
23rd November 2022
01:40pm GMT
Hector and his mother Marie Clare (Marie Clare Tully)[/caption]
"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," she said.
"There was still a long way to go but to know the team thought he was going to survive was so great."
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. In his first year, the baby boy has spent 259 nights in hospital and was only able to go home for the first time in April 2022. 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. Marie Clare and Angus make sure to focus on each day with their son as they do not know how his condition will affect his life in the future. And despite everything, Marie Clare said she "feels like the luckiest person" and that the last 12 months have been the "best year of my life." [caption id="attachment_368205" align="alignnone" width="1300"]
Hector celebrating his first birthday (Marie Clare Tully)[/caption]
She said: "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."
Reflecting on how the family celebrated Hector's landmark birthday, Marie 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."
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."
