Osian’s story: “We lost valuable time at home with Osian, waiting for home care”
“The hospital is for acute illnesses, it’s not for a child to grow and develop in. We lost valuable time at home with Osian, waiting for home care, but we made the best of the time we had together in hospital.”
This is Osian’s story, told by his mum George.
When George was 23 weeks pregnant, she had an infection and went into early labour. Baby Osian was welcomed into the world in November 2021 weighing just 507 grams.
Shortly after Osian’s birth, he was diagnosed in the neonatal unit with chronic lung disease and placed on a ventilator. Osian spent the first 105 days of his life in hospital on a ventilator. More heartbreaking news came only a few months later when he was also diagnosed with a narrow airway due to the many months of being ventilated.
When he was seven months old, Osian’s future started looking brighter. He had a tracheostomy fitted to help him breathe, which meant he didn’t need to spend as much time on the ventilator. “It was the best thing to happen to him. Osian never got the memo that he was a premature baby. He couldn’t breathe very well but he was standing up, crawling and smiling at everyone. Despite everything, he was a very happy baby.”
With Osian’s prognosis looking more positive, his family were delivered the good news: Osian had been awarded a care package and was to be discharged from hospital, with the help of carers at home. But there was one major problem. They could not find enough home carers to help.
We put the advert out for carers in August. By December, we still didn’t have enough staff. We had to have our care package topped up with nurses from an agency, otherwise Osian would never have left the hospital.
Five months after the doctors agreed for Osian to be discharged, and with a full home care team lined up, Osian was finally able to spend precious time with his family, in his own home.
As well as the home carers, Osian’s family were also supported by their local children’s hospice and a nurse from their Community Nursing team. They are still supported by both.
“When Osian finally came home, so did all his medical bits. And there was so much of it. All this stuff came from different places and suppliers and there was so much to organise and keep on top of. It’s a full time job. Our community nurse was amazing and helped us with everything. She was always there if we needed her. And she still is.”
Sadly, in March 2023, Osian suffered a blockage in his tracheostomy and quickly stopped breathing, then went into cardiac arrest. “We 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, in the arms of his family.
Thousands of families across the UK, like Osian’s, aren’t able to access the care and support they need, because of where they live. George is sharing her family’s story after seeing our Short Lives Can’t Wait campaign. She is passionate about making sure every family is able to spend precious time together, in their own home, with the care and support they need.
“It feels like the system, the limitations and the underfunding let Osian down, not individuals. I truly believe that everyone who helped us did their best. They did the best they could, based on what they had. But something needs to change, so that babies like Osian aren’t growing up in hospital, when they could be in their own homes.”
