Osian’s Story: “Sometimes I think he was looking directly into your soul”

“Osian was full of joy and magic, and that is how we will always remember him,” says Osian’s mum George, remembering the boy who was born at 23 weeks and spent almost his whole life in hospital.

Baby Osian arrived into the world in November 2021 weighing just 507 grams. “I had an infection and so went into early labour at 23 weeks. We were told immediately that the chances of him surviving were very slim indeed. He had chronic lung disease and then later a narrow airway due to many months being ventilated. Every day was going to be a fight for him.”

Osian was immediately moved to intensive care where he spent much of his life. He was placed on a ventilator and mum George was finally able to have a cuddle.

Months later, Osian was able to come off his ventilator and was moved onto high-flow oxygen and CPAP (Continuous Positive Airway Pressure) – a big step forward for the family. After a successful operation to dilate his airway, Osian was moved out of intensive care and to a local hospital.

‘Showbiz’

“There were so many times when we nearly lost him. In June 2022, he was fitted with a tracheostomy and it was the best thing to happen to him. He started to thrive as a baby. He was growing, sitting, laughing, smiling. But he was always silent.” Due to Osian’s condition he didn’t have a speaking valve which meant that he couldn’t make sounds. Finally, in January 2023, Osian was moved back home.

“I described Osian as ‘showbiz’ because that’s what he was like when you met him. It was like he turned a light switch on, sometimes I think he was looking directly into your soul.”

“Osian started to crawl and despite his illness he was living a truly full life. I made sure of it. That’s what I want people to remember about him. He wasn’t his illness or his condition. He suffered great hardship, but he was not sad.”

In March 2023 everything changed. Osian suffered a blockage in his tracheostomy and quickly went into respiratory arrest, followed by cardiac arrest. “We quickly got his heart beating again and got him to hospital. He spent five days in hospital where it was confirmed that Osian had suffered brain damage. It was such a shock. We were so unlucky.”

Osian died on 25 March 2023. “Osian defeated so many odds, so when it came to his funeral, we truly wanted to celebrate his short life. We had music, and we wore bright clothes. We danced and we cried and we remembered all that Osian gave and shared with us. Grief is awful, it is cruel. Every day is different and unexpected. But we move forward because we have to.”

Our Butterfly Grant

After his death, Osian’s family were referred to receive a Butterfly Fund grant from Together for Short Lives – a one-off £300 financial gift that the family can choose to spend however they want: “We have saved the money and will be spending it on our first holiday to Salou later this year. We have never all been on holiday together. We will spend time as a family and remember Osian. We want the kids to have fun.”

“Life now is completely different. No parent should ever have to lose their child. It’s tremendously sad and just so unfair. And so we spend every day talking about him and celebrating him – all that he brought into this world – and all that he left behind. He was magical.”

Osian’s family is one of the thousands we have helped this year with grants, advice or just a listening ear on our helpline, you can find out more about how we’ve helped families in our 2022 – 2023 impact report here.