Credit: Rob Dodsworth photography
Beatrice Octavia Iris Smith was born on 28th November 2013. Her mum Leigh, dad Toby and her four year old brother Elliott, helped her settle into life at their home in Norwich and enjoyed their first Christmas together as a family.
In January Beatrice became unwell and was taken to hospital where she was later diagnosed with restrictive cardiomyopathy - a rare heart condition.
Beatrice spent the next six weeks at the Norfolk and Norwich Hospital and Great Ormond Street Hospital (GOSH). She was placed on the top of the UK transplant list awaiting a heart, and because the outcome was unknown, the family were referred to EACH.
Leigh said: “It became clear that Beatrice was dying and would be unlikely to survive long enough or be strong enough for a heart transplant. We knew our little girl was just too tired and could fight her battle no longer.
“On the morning of 24th February, after a long night holding her in our arms, we made the decision to let her go. We also decided we’d like support from EACH so the team at GOSH and EACH made arrangements for after her passing. She passed away in my arms very peacefully holding mine and her daddy's hands.
“EACH made arrangements for Beatrice to travel home to Norfolk and we met her at the hospice in Quidenham (which has moved to The Nook, in Framingham Earl). She arrived in a Moses basket and had her own room with her name on the door and was cared for with such respect and dignity. As a parent we couldn’t have asked for a better way to say goodbye in the worst of situations. She looked angelic.
“The staff helped with funeral arrangements. They gave our son Elliott all the support he needed, which also gave Toby and I the precious time we needed to sit with Beatrice and say our goodbyes in an environment that was not a hospital, but a real home from home.
“While Beatrice was at Quidenham, we were able to all stay as a family together, knowing that she was nearby, and this was such a comfort at the darkest of times. We were able to do lots of memory work; creating keepsakes and family pieces that have become the most treasured of items. Beatrice remained at Quidenham until her funeral, and we were able to visit her whenever we wished.
“The time at the hospice with Beatrice was just the start of the support we have received from EACH. Both Toby and I have had counselling as a couple and I now regularly attend the bereavement support group with other mums and dads. This is invaluable and provides a time when I feel I can be with others who really understand the agony and pain of losing a child. It also provides a time which I can devote to my little girl and this for me is very special.
“There can never be enough thank you’s or words to express our gratitude. For us, having the time staying at Quidenham with Beatrice after she had passed away was so important. In the darkest and most painful of times, EACH has given us the best in the worst possible situation. We now have positive memories of our time at Quidenham and the images of how peaceful Beatrice was there and how well they looked after her to keep us going through the most difficult of days.
“As a mother, you never want to let anyone take care of your child and this feeling is even greater when they have died. I was so apprehensive about leaving my little girl alone, but once we were at the hospice I knew she couldn’t have been in better hands. We had the time to say goodbye and say all we wanted to say. That now counts for so much, and we feel so grateful that we had the opportunity. Family and friends were also able to visit and say their own goodbyes as many had been unable to see her in hospital.
We felt and still feel that if we’re struggling, we have the help of Quidenham to call upon and now have a new network of people that can understand the unwanted journey we now take. Without the support of EACH this desperately hard situation would have been so, so much harder.