When little baby Osian was born on November 9, 2021, at only 23 weeks his mum Georgina was told he only had a 20% chance of survival. But "warrior" Osian has defied the odds and will soon be discharged after spending the first year of his life in hospitals.
Though he still has a lot of challenges ahead of him, his family have said they are very excited to bring him home to live with his siblings.
Mum Georgina Jones, who is originally from Swansea, said: "Osian was born with chronic lung disease and all the other complications that come with being so tiny - a birth weight of 507 grams. He was born on a Tuesday so in the early weeks we used to celebrate getting to Tuesday, when we had hit a Tuesday it meant that he had made another week. Tuesdays went by in the NICU in Southmead hospital and Osian was still on a ventilator." You can get more Swansea news and other story updates straight to your inbox by subscribing to our newsletters here.
Little Osian stayed on a ventilator for the first 105 days of his life. One day he decided to remove his ventilator himself (he clearly knows his own mind!) and managed to go on the CPAP mask. A few weeks passed and he was moved to St Michaels Hospital in Bristol in March, 2022. There he had a hernia operation and the first procedure on his airway. It turned out that it wasn’t only the chronic lung stopping Osian coming off the ventilator, he also had a narrow airway - the medical term is a stenosis.
Georgina said she had so much gratitude to all the "amazing" staff who had supported them through the last 14 months. The family left St Michaels Hospital after Osian’s procedures and the prognosis was looking good. He was on low flow oxygen and really stable.
"We were breastfeeding which he loved," said Georgina. "I breast pumped for 7 months to make sure I was still producing milk - that’s 8 pumps a day and one in the night - the things you do for love! Our next hospital was Bath, our local hospital. This was in April, 2022. We were thinking about setting up the nursery and couldn’t wait for family and friends to finally meet him - Covid restrictions had stopped anyone meeting Osian prior to this."
Sadly, things were not meant to be and Osian declined, and his oxygen requirement soared to the point that he was requiring high pressures and 100% oxygen. He was rushed to his fourth hospital, Bristol Children’s Hospital Intensive Care.
"This was our darkest time so far, Osian was so poorly, back on a ventilator, heavily sedated," said his mum. "We were preparing for the worst, we met the palliative care team and talked about maybe saying goodbye to Osian if he couldn’t pull through. Weeks passed and he slowly got better, we will never know what was wrong, a bug or virus but the tests didn’t show anything.
"One of the major things that has happened to Osian is his tracheostomy. This was decided after his last failed attempt to get off the ventilator. Having a tracheostomy is no walk in the park, we need to look after it and of course there is more chance of infection. It gives Osian what he needs for now and myself and his Dad have been trained and signed off by the wonderful NHS nurses to change and look after it."
The family are going to be able to take Osian home for the first time on January 10. However, the adaptations required and supporting Osian's needs will not be easy and so they have set up a GoFundMe page which you can donate to here.
In many ways Georgina has had to put her life on hold to be there for her son. This has included giving up her training business.
"I sometimes think, 'oh, my God, I've been in hospital for over 400 days' and think how have I been able to get through it," she told WalesOnline. "But you just adapt. Human beings are very good at adapting. The hospital staff are incredible, the nurses are incredible. We've got amazing family that we've been able to help with child care. And you get through. Everyone else is getting on with their life, they go on a holiday, they go and have days out, they have plans, but we, we can't really do that at the moment because our son's in hospitals."
She added, laughing: "So we're either looking after children or sleeping. That's pretty much how we roll."
Georgina added that, given they had no idea how long Osian would have when he was born, they valued every second with him. She said: "I live like that now. I think I always will with him, because he had such a decline, it was so rapid. It was always going to be touch and go with him. He was on an oscillator for almost a week. We had very, very low odds of him surviving. He pulled through like he does because he's a warrior.
"I always start the day thinking, 'how can I make today special for him?'. Osian has got an uncertain future. We don't know how his lungs are going to develop, we don't know whether he would be able to come off the ventilator. There's a lots of unknowns. He is showing signs that there's development and growth so that's good. But as we've seen in the past, that a bug and a virus can really, really impact him because he is vulnerable. And that vulnerability, I am never going to forget because that's what makes me vigilant, washing my hands and making sure that everyone's wearing masks and all these things that keep him safe."
Speaking to Georgina you can't help but be struck by her positive outlook despite the real challenges the family have faced. "You can feel sad about it and acknowledge it, and that is fine," she said. "But also you can just be grateful that your son's still here, and you get to spend another day with him. There's so much to be grateful for at the end of the day. I feel like I'm really lucky. I had a baby at 23 weeks with less than 20% chance to live. He is developing, he's having small bits of food, he's drinking some milk, he's sitting up assisted. I am grateful."
Georgina, who set up a TikTok account to chronical Osian's development, now lives in Frome but was very keen to give her son a Welsh name. "I'm Welsh," she said. "I grew up in Swansea and I lived in Cardiff for most of my adult life until my 40s. Now we live in Somerset. We moved about five years ago and we wanted our son to have a Welsh name." You can donate to the families fundraising page to help them prepare for Osian's discharge here.
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