Oscar

Chelsea’s son, Oscar, was starved of oxygen at birth due to complications. This led to brain damage and Chelsea was told Oscar wasn’t going to survive.

After six days in intensive care at Leicester Royal Infirmary Chelsea was advised to remove his life support as nothing further could be done to save little Oscar.

“I made the decision to turn the life support off and let him go peacefully as I thought that would be best for him,” said Chelsea. “But he decided not to do that. He decided he wanted to live instead.

“We had four weeks there and Oscar seemed to thrive. We were learning all about him and having lots of fun. Oscar appeared to be doing all the things any baby does. He was feeding fine and didn’t need his oxygen anymore.”

As the weeks went by, and once back home, Chelsea was aware Oscar wasn’t meeting his milestones. He was then diagnosed with West Syndrome, which is a severe infantile epilepsy syndrome and a consequence of the brain damage at birth.

Chelsea says although he is five, Oscar is like a three-month-old baby. He is unable to move around or talk and he is registered blind. He needs round the clock care from Chelsea and her fiancé, Tom.

“I guess it isn’t a bad age to be trapped in,” said Chelsea. “He is very happy and loves spending time listening to music, making noises and kicking. Although he is blind, he will spend ages looking at lights. He has fibre optic lights and disco lights and he loves them.

“Oscar is very happy and always smiling. After years of crying, I never thought he would be able to smile but he can. He just laughs and he is so innocent because he doesn’t understand his pain.”

When Oscar visits our hospice now, he is joined by his younger siblings, Mila and Teddy.

Chelsea added: “As well as Oscar, Mila really loves Rainbows and that is making a difference for us. Them being together is bringing out the best in everyone and we see it as a fun place. For me, it is a break. I love the food, I can relax more and I can enjoy doing the nice things with my children.

“Looking forward, we take every day as it comes. In the past, I have dealt with things badly. I didn’t like people staring at us but now I don’t care. Oscar is my pride and joy and I am happy to show him off.”

 

I was told about Rainbows immediately and went there within the hour. I remember walking up to the doors and it was very surreal. I felt it was like the path was leading me into a second chance with Oscar.