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Treasuring Every Moment: Thomas' Story

September 26, 2018

After being born at only 23 weeks, Thomas spent nearly a year in hospital. Here his mum tells us about their experience of Ronald Mcdonald House Brighton and those early, difficult days.

Thomas was born extremely prematurely at the Princess Royal Hospital in Hayward Heath at only 23 weeks and four days, weighing 1lb 6oz. Within hours he was stabilised and transferred to the intensive care Trevor Mann Baby Unit at the Royal Sussex County Hospital. We were told that babies born that early had an 11% survival rate nationally, and we were prepared to treasure every moment we had with him.

Thomas fought through several serious infections, surgery to close the open duct in his heart, and many setbacks with his breathing. Near his due date Thomas was still needing a high level of breathing support and transferred to the High Dependency Unit at the Royal Alexandra Children’s Hospital next door.

We stayed in the Ronald McDonald House Brighton. The staff made us feel so welcome and the facilities really made it feel like a home from home. It was such a relief to know that we could stay so near Thomas when he was fragile. Dan and I were so grateful just to have some private space to be together and start to deal with how premature Thomas was. It would have taken us an hour each day, plus cost of fuel and car parking. It also meant we could sleep better knowing we could be with Thomas in minutes if needed.

While we were at the House, we also got to know other families and made some lifelong friends. The kitchen facilities also meant we could cook and cater for ourselves and not live completely on Subway!

Over the months, Thomas grew bigger and stronger. The next tough thing to take was learning he’d developed ROP (Retinopathy of Prematurity) stage 5 in both eyes, meaning he’d become completely blind as a result of being so premature.

But Thomas continued with his journey and as he grew bigger he turned a corner and went just onto oxygen. After 364 days in hospital he was well enough to go home!

Thank you Ronald McDonald House Charities for keeping our family close.

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