Jacob was born in October 2011. He had a massive bleed on his brain at birth, has heart problems, chronic lung disease and Noonans syndrome. Jacob always has lots of fun when he visits Bluebell Wood with his family. His mum, Kerry, tells his story.

“I’d had a high risk pregnancy with Jacob, and even before he was born, I’d been in hospital as his heart kept stopping and starting. Jacob was born at 28 weeks, weighing only 2lbs, but with lots of hair! The doctors told us then that he wouldn’t survive long, and he wasn’t breathing on his own. He was really poorly, and wouldn’t take any of his milk. He needed to have an operation to check if his bowels were working, but he was so tiny, they told us he might never wake up from the operation. Our whole world collapsed.

“After this, they had to put a line into his heart and he got a massive blood clot. We were then told that they didn’t think he would make it to Christmas. He was on full life support for 5 months. On New Year’s Day 2012, which was Jacob’s due date, he pulled out his breathing tube, and incredibly, started breathing on his own. He was still really poorly, and had to have two more heart operations before he was eight months old.

“When Jacob came home, I found out that I was 16 weeks pregnant with my third baby, Mia. That’s when we started going to Bluebell Wood. I needed to go for regular scans and ante-natal appointments, and having Bluebell Wood’s help meant that I could drop Jacob off there first, knowing he was in safe hands, and was being really well looked after. There was no-one else who could help feed him, and give his medicine, so having the support of the hospice made the biggest difference. He loved it and was so happy there.

“When I had Mia, I was in labour for three days. Again, Bluebell Wood looked after Jacob, so I didn’t have to worry about him. I don’t know how I would have coped with everything without the support of everyone there. Throughout my pregnancy with Mia, I was terrified of something going wrong again, so to be able to talk to someone who really understood meant so much to me.

“My eldest son Leo absolutely loves visiting Bluebell Wood as well. I had no idea how to break the news to Leo about Jacob – how do you tell a four year old about that kind of thing? The Care Team have helped me so much and given me some really good advice on how to manage Leo’s emotions.

“Jacob loves the attention he gets at Bluebell Wood, and we love being there together as a family. Leo also goes to their sibling group, and loves it. At the hospice, Leo can see other children like Jacob, and see that he’s not alone, and he’s not different. He doesn’t see disability, he just sees another child. Jacob loves everything about Bluebell Wood – they’ve helped my whole family so much.”