After our 20-week scan of our much-longed-for first child we were devastated to discover our baby had Hypoplastic Left Heart Syndrome, a rare congenital heart defect in which the left side of the heart is severely underdeveloped, meaning it is unable to pump blood around the body effectively. The only hope our child had would be a process of 3 open heart operations within the first 5 years of their life to replumb the heart so that the right side did everything. This wouldn't fix the problem and there would be risks, but it would hopefully give our child a chance at life. Statistically 60% of babies make it through all three operations and past the age of 5. We were devastated, but tried to remain postive and hopeful that our baby would have a fighting chance. 

Our beautiful daughter Sophia was born on the 27th March 2019 at Preston Hospital. Scans were carried out shortly after which revealed her heart condition was so severe they didn’t think surgery was possible. Sophia was transferred to Alder Hey for further assessment where they confirmed the worst, her condition was inoperable. Our world came crashing down. After various discussions with the staff at Alder Hey and our parents regarding what to do next, we decided to be transferred to a children's hospice closer to home. After all that is what such a place is for but, having said that, we had absolutely no idea what to expect.

On 2nd April Sophia was transferred to Derian House Children's Hospice. They not only provided us and Sophia with a room, they also put our parents up in the room next door and provided us with further accommodation upstairs. We had no idea how long we had left with our daughter but we were able to spend this precious time as a family, privately in a comfortable and homely environment, with nurses on hand as and when we needed them. We were able to share this time with Sophia's grandparents which they were also grateful for. The staff at Derian House were great, they cared for us, supported us, fed us and helped us make memories and precious gifts with Sophia's hand and footprints, as well as making sure she was comfortable in her final hours. We could not have wished for anything more in that situation.

Sophia passed away peacefully in the early hours of the 4th April whilst enjoying daddy cuddles.

In the days that followed we were able to stay at Derian House, allowing us to take the time to try and process and come to terms with what had happened in that whirlwind of a week. Sophia was in a special room in a cuddle cot (a cooling mattress) so we could go in and see her whenever we wanted. After a week we decided we were ready to go home and have Sophia moved to our local funeral home.

The support from Derian House continues- in the form of counselling, memorial services, and even just as somewhere where the door is always open and the kettle is always on! From our very first encounter with Derian House we have been made to feel welcome, part of their family and we are welcomed back whenever we like. Having this continuous support system is invaluable, and Derian House will forever now be a part of our lives. Although our time there with Sophia was only short and our story is only one aspect of what they do, whilst we were there we got to witness and learn more of the wonderful work they do in providing respite and care for children with life limiting or shortening conditions. The hospice costs over £4 million a year to run and we were surprised to learn they only receive 9% of funding from the government, they therefore rely almost entirely on donations and fundraising. 

Please help us to help Derian House Children’s Hospice continue the great work they do and support us by giving what you can, every little really does help make a difference.

Thank you for taking the time to read our story 💖