Four month old, Lily, died at Bluebell Wood in February 2017 after being born with a rare heart condition. Her mum and dad, Ella and Ryan, call the hospice their lifeline, and they still visit with their son, Oliver. Ella shares their story.

“I had a straight-forward pregnancy with Lily, but after she was born she wasn’t gaining any weight. After she had an echo ultrasound we found out she had a heart condition called TAPVD. We stayed in hospital for 11 weeks while Lily had four operations.

“In November, two months after she was born, Lily became really unwell and breathless. The doctors checked the veins in her heart, and discovered she had a condition called pulmonary vein stenosis, which meant the veins that had been corrected by the surgery were starting to narrow because of scar tissue. That’s when we realised that Lily would have a much shorter life. The condition is really rare – about one in 10 billion – so there’s no leaflet you can read to prepare you for what happens next. After spending a few weeks at home over Christmas, Lily got really sick. She had lots more tests, we were told the news we’d been dreading; that she was going into heart failure and there was nothing more we could do.

“I’d spoken to a nurse at Bluebell Wood, and she seemed to really understand our situation, so I knew that’s where we wanted to spend the end of Lily’s life. As soon as we stepped into the lounge, I knew we’d made the right decision. Coming to Bluebell Wood gave us time to be with Lily as a family. After being in hospital for so long, it was amazing to have a bit of normality. I remember one of the nurses asking me if I wanted to go out in the garden with Lily, and I was so surprised that I was allowed to do something like that. Even though I carried on doing Lily’s medications in the evening, the Care Team were there to help out whenever we needed them.

“After 10 days, we went home, knowing we could ring the hospice whenever we needed. One night, Lily was particularly bad, and we could tell she was really tired and fed up. I phoned Bluebell Wood and asked them to come and have a look at her. We all decided it would be a good idea to go back to the hospice. At that point, Ryan and I both knew that Lily wouldn’t be coming home with us.

“That night she was very unsettled and all three of us hardly slept. The next morning I went to get her medication, and when I came back, Ryan looked at me and said, ‘she’s going to die’. She was breathing really fast, which was one of the things we knew would happen at the very end. We both lay down next to Lily on the bed, and not long afterwards, she passed away. It was oddly peaceful; it was a relief to know that she was safe now, and that she wouldn’t need any more surgeries or medication. 

“After Lily died we stayed in the forget-me-not suite, and it was so important having that time together. Our family and friends could visit us and know that we were okay, and I could still see Lily as much I needed. The day she left Bluebell Wood, I stood in the doorway watching the drive as all the staff lined up to show their respects. It was such a special moment and it shows what a caring place the hospice is.

“Even after Lily died, the support at Bluebell Wood has been amazing. I found out I was pregnant with Oliver three months after Lily died which made me very anxious, particularly until we had the baby’s heart checked, so it was helpful to see one of the counsellors and talk through how I was feeling.

“I don’t quite know what we’d have done without Bluebell Wood. We didn’t use the hospice for very long, but it is one of the happiest places we came with Lily. They made the hardest thing a parent can go through easier. Not easy, but easier. That was so important for our family.”