Lisa and Mike Spinks’ Story
"Our son Rory was diagnosed with athymic complete DiGeorge syndrome in October 2013, which essentially means that he was born without a functioning immune system. As a result, we spent the best part of 3 years in and out of hospital, which included many long and difficult stays. Having a seriously ill child in hospital is one of the most stressful experiences a parent can go through and all of us respond in different ways to the pressures of hospital life but most of us, at some point feel lonely, frightened and far away from home and the support of our friends and family.
We spent the majority of our time with Rory in his room day and night, which involved complicated rotas to ensure he was never left, that we both saw our other sons and that Mike could continue to work full time.
Sometimes, we just needed a break: when Rory went to the operating theatre, we didn’t want to wait by an empty bed but we were too nervous to leave the hospital; we had to have many difficult conversations with the medical staff and afterwards we needed to talk (or cry) and not in front of Rory; Rory was on TPN for the majority of his life which meant he was fed intravenously and as a result we never felt that comfortable eating in front of him; or sometimes we just wanted to connect with someone else who knew what we were going through – other parents.
Unfortunately, sitting rooms/kitchens for parents or carers in hospitals are often given very little thought – it is the child who is sick after all. This is true of course, but as we parents play a vital role in our child’s care team so this needs to be seriously re-evaluated. If we look after the parents, then they are better fuelled physically and emotionally to look after their child so everyone benefits.
Mike and I are determined to do what we can to make families’ experiences in hospital more bearable, to help parents develop friendships, share their experiences and give them the space they deserve."
Lisa and Mike