Baby given one day to live reaches first birthday

time:2023-06-04 12:14:12source:NBC News author:Press center6

When Marie Clare Tully gave birth to her son Hector, prematurely at just 23 weeks, doctors said he probably only had a day to live.

His mum was told to say her goodbyes because he had a very low chance of survival.

But Hector defied the odds and Marie Claire's "miracle baby" has now celebrated his first birthday.

It has not been an easy 12 months but his mum said it had been the happiest year of her life.

So far he has spent 259 nights of his life in hospital after being born with severe complications due to his prematurity.

He has hydrocephalus, which means spinal fluid cannot flow around the body, due to a bleed on his brain. He also has chronic lung disease, retinopathy, a feeding tube and centralised sleep apnoea.

Marie Clare, 41, 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."

Hector was born on 12 November 2021 when Covid restrictions meant he had to be put into isolation until he tested negative for Covid.

Marie Clare and his father, Angus, were not allowed to visit their son for the first 40 hours of his life.

Staff sent the Edinburgh couple picture updates of their tiny son while he battled for life in an incubator.

"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," Marie Clare told BBC Scotland.

"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."

Marie Clare, a chief executive of a charity who is currently on maternity leave, said that after almost two days, they were allowed to make short visits to see him and after five days they were able to be with him day and night.

After 42 days doctors took him off his ventilator and said he would live.

"When I heard, 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 told BBC Scotland.

"There was still a long way to go but to know the team thought he was going to survive was so great."

It was not until April 2022 that he was allowed to go home - more than five months after he was born.

He is still a regular patient at the Royal Hospital for Children and Young People, has had 15 operations and has been rushed to A&E 25 times.

The damage to the brain from hydrocephalus can cause a wide range of symptoms, including: headache, being sick, blurred vision and difficulty walking.

Despite the struggles Marie Claire said: "I feel the luckiest person, he's so fun, he brings so much joy to so many people.

"I'm so proud of him. He is a miracle, he is beyond a miracle and I am so proud of him."

About 4,000 babies are born premature in Scotland every year but only a small percentage are 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.

"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.

Marie Clare said she was blown away by the support from staff at the hospital.

She said: "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 Royal Hospital for Children and Young People has asked Hector and his parents to switch on the Christmas lights on Sunday afternoon.

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."

The couple lost a baby in pregnancy three years before so Hector's pregnancy had been high risk.

Marie Clare said: "When I went to 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.

Marie Clare and Angus, 41, director of music at Fettes College, focus on each day with their son as they do not know how his condition will affect his life in the future.

The couple have now celebrated his first birthday.

Marie Clare 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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