This is the story of one precious baby boy, Ethan. His parents Anna and Matt tell their story.

“When I was 20 weeks pregnant we found out that Ethan had a heart defect. We were told that it wasn’t good but we were given hope that there would be an operation that would save his life.

”Bringing Ethan into the world wasn’t easy but the first moment we saw him, we were instantly in love. Our beautiful baby boy was all we had dreamt about for as long as we could remember. It was the happiest moment in our lives,” Anna said.

“Just moments after he was born, our world turned upside down. He was taken away for tests and the results showed his heart was worse than scans had originally shown.

”At this point, there was no operation that would help Ethan. He was on medication but he couldn’t take this indefinitely. Without his medication, his heart would shut down. What had been the best day of my life soon became one of the worst,” Matt said.

A few days after his birth we were told that it was only a matter of time before we would have to say goodbye to our baby bear,” Anna said.

“We moved from hospital to Bluebell Wood. When we arrived, we were made to feel at home straight away. The room we stayed in meant we were with Ethan day and night, which was something we didn’t get to do in hospital,” Matt remembered.

“We needed to make memories and hold him a much as we could, so we spent time with him in the sensory room, laid in bean bag chairs with soothing lights and gentle music. We read books to him and took him for strolls around the garden. I was able to feed him, change him, bathe him and hold him whenever I chose. For the first time we took care of him as parents do.

On our third day with Ethan, we knew his heart was beginning to fail him and every moment with him was precious.

”The night before he died, we did not sleep a wink. We sat with him in our arms and watched him sleep; nursing him when he woke.

“I knew we were losing him, so we sat in our room and held him. It was then that I found comfort because he was in my arms in his final moments. I told him I loved him and we read ‘I love you as big as the world’ to him. He looked into my eyes for the last time and drifted off.

“On the day he died I spent the morning reading stories. The last story was Peter Pan. At the time I did not think about how ironic it was, that he too would be like the boy who never grew up.

”Two of the nurses bathed Ethan and dressed him in the clothes I had chosen. I couldn’t bear to do it myself.

“I held him in my arms for three hours after he had passed because I couldn’t let him go. But at the point that I did, I knew it had to be for the last time I held him.

”Everyone at Bluebell was amazing. They made us feel at home and gave us chance to be a family in a safe, comforting place. We had people around us supporting us when we needed. It was like being in a safe bubble.

When we left, I cried all the way home. Not just because I had lost my baby, but because I was afraid of leaving what had been a haven to myself and Matt.” Anna explained.


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