Mason loves music sessions, baking, water fights in summer and time in the sensory room. Sadly, Mason was born with Hypoplastic left heart syndrome which means the left side of his heart didn’t develop completely. Mum and Dad, Nicola and Dave, explain how Bluebell Wood’s support has helped them cope with Mason’s condition.

"At 20 weeks pregnant, we were told that our baby would have this condition," said Nicola.

"After his birth, Mason had his first surgery at just four days old. He spent the first seven weeks of his life in hospital and was tube fed until he was 18 months old. Mason had to have a special frame to learn to balance and was two years old before he could walk. He then had a pacemaker fitted, followed by several operations on his heart to improve the blood flow and circulation in his body."

Nicola explained: "The operations weren’t very successful, so he went on the transplant list for a new heart in 2021.

"It’s always on our minds and we constantly hope that we’ll receive that magical news from the doctor to say the hospital is ready with a heart for Mason."

"Mason’s condition has worsened over time, and he gets lethargic, often needing his wheelchair
and oxygen when tired. If he runs around too much, he is sometimes physically sick and this is
hard to watch when he is enjoying himself so much, as he wants to keep active and have lots
of fun. Mason goes to a regular school but we’ve had to reduce his hours there because he
can’t manage a full day. We are hoping to send him to a special medical school, but places are
limited.

"When Mason was put on the transplant list, a paediatrician came to visit us and told us about Bluebell Wood. We were a bit nervous when we first walked through the hospice doors as we had associated it with end-of-life care but we soon realised it’s not what we thought.

"You feel instantly more relaxed and supported by the staff. It’s a really happy place."

"We’ve enjoyed short breaks at the hospice with the whole family, `including our younger son, Jacob who loves charging around on the toy cars and baking with his big brother. It’s so nice to have our own room down the corridor from Mason and to be able to relax when we’re there. The care team are incredible. Mason even had a 5am glow stick rave in the sensory room with the nurses!

"We also visit the hospice for activity days, as well as specialist counselling sessions for ourselves and for Mason. Bluebell Wood’s family support team have been great and signposted us to other organisations who can provide support and trips out for families like ours. We’re looking forward to making special memories at a two-night Disney experience soon. 

"You never know what can happen in life and it’s great to have Bluebell Wood with us every step of the way. They have been a lifeline."

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