Family stories

Archie’s story

In 2016, Ed and Fiona welcomed their twin boys, Archie and Harry, into the world. But their joy turned to despair when they found out that Archie had been born with half a heart. They quickly discovered that when you have a child with a life-limiting condition, having support from a children’s hospice is invaluable. Ed tells their story.

“Archie was born with half a heart”

For parents who have a child who is born with a life-limiting condition, the world is often an emotionally worrying and fraught place. The thought of a hospice doesn’t even register in your consciousness, and this certainly was the case with us when Archie was born in 2016.

We were told very early on in Archie’s life that he was going to be life-limited. He had his first heart surgery at just 10 days old and stayed in hospital for eight months due to his complex medical needs. This was obviously a very worrying time for us as a family. Archie has a twin, Harry, and an older brother, Ollie, so we were trying to navigate life as a bigger family as well as the emotional rollercoaster and practicalities of having a very young child in hospital. Coupled with this, I was also on the waiting list for a liver transplant due to a condition that I had suffered with since birth, so things were certainly hectic. My poor wife!

Selection of images of Archie and his family

“He was eight months old when he came home from hospital”

After his heart surgery, Archie was finally able to come home from hospital at eight months old, and that’s when we were introduced to the team at Chestnut Tree House for additional care and support. We didn’t really know what to expect. But quickly discovered that when you have a child with a life-limiting condition, having support from a children’s hospice is invaluable.

Every child who comes through their doors is different, each with their own sets of needs. Archie probably falls into the category of needing less hands-on care than most but that doesn’t mean it’s all plain sailing with him.

Archie at the hospice

Knowing that the team at Chestnut are there for us, and understand the challenges we face, makes a huge difference.

“Archie is at his happiest when he is at Chestnut Tree House”

Chestnut consistently put the child first to make sure they can have a childhood that, although vastly different from their peers, offers them the chance to experience the same joys and little things in life that is all part of growing up.

But it’s not just Archie that Chestnut provide care and support for, it’s all of us. They offer family stayovers, so our first experience was actually a two-night break there with all three kids. It was a wonderful introduction for everyone. For Archie, it gave him the opportunity to explore the House with the comfort of us being around. And for us, it was a way of getting some welcome respite – safe in the knowledge he was being well looked after and knowing that he was so close in case he needed us. But we needn’t have worried as from day one he gave us a quick goodbye glance and never looked back.

Archie and the whole family

“No one knows what the future holds”

Now, almost six years after we were first introduced to Chestnut, Archie has had eight heart surgeries, five of them being open heart. He is currently in good health, and he’s so happy – the life and soul of our family. But he still has incredible hurdles that he will have to face in life. We’ve already been told that we should expect him to have a heart and lung transplant when he’s older.

No one knows what the future holds for Archie. It may well be the case that like many families before us, my wife and I will be placing a pebble with his name on in their beautiful garden of remembrance. You can’t underestimate the difference it makes knowing that whatever comes next, the Chestnut team are there for us.