Robin House cared for us all the way to the end

National Storytelling Week (28 January '“ 4 February) is a great way to keep the tradition of spinning a yarn alive and it's important to our culture to keep legendary tales such as Sawney Bean and his family of flesh-eating cannibals to the Loch Ness Monster passing down the generations.

Martine and Nairn Brown

For people dealing with grief, storytelling can be a therapeutic exercise to help them come to terms with their loss, while keeping the memory of their loved ones alive. At Children’s Hospice Association Scotland (CHAS), the power of storytelling helps us connect with families, and one of our Mum’s, Martine Brown has found it a cathartic process to help her cope with the death of her son, Nairn. Here she tells us their story and how they came to be at Robin House. In March 2015 we were expecting our third baby, after a miscarriage with our second pregnancy. A difficult 24-hour labour and an emergency C-section brought our beautiful boy, Nairn Stephen Brown, into the world.

I’ll never forget holding Nairn for the first time. He suddenly stopped breathing properly and was rushed away by the crash team. We had no idea what was happening and were left waiting in a cubicle for five hours. Eventually the paediatric consultant came to tell us that Nairn’s lactate levels were high, and he’d have to stay in hospital, but she couldn’t really explain what that meant.

Three weeks later, things were looking up as Nairn was feeding well through a gastric tube, and we were allowed to take him home.

When Nairn was five weeks old, we went to Glasgow’s Yorkhill to see a specialist in metabolic conditions and he introduced us to the term Pyruvate Dehydrogenase Deficiency. The prognosis meant that at best, Nairn could be facing a difficult life with lots of physical and mental challenges, and at worst he might not live to school age.

Telling people was hard and I found myself being selective with who I told.

In June 2015, when Nairn was 11 weeks old, he started turning blue and couldn’t breathe properly so we called an ambulance. When we got to A&E, the decision was made to transfer him to the new children’s hospital in Glasgow. He was stabilised and underwent further tests. The results weren’t good. Nairn’s basal ganglia, the part of the brain which helps with breathing, wasn’t functioning properly, and we were told that there was nothing that could be done to save our son.

We were given three choices; we could take Nairn home, stay in hospital, or transfer him to Robin House in Balloch under the care of Caroline Porter. Part of CHAS, Robin House cares for babies, children and young adults with life-shortening conditions. We chose to speak to Caroline and she told us that Nairn would receive the same level of care at the hospice as he would in hospital, but in a more dignified and comforting environment.

The staff at Robin House looked after us as a family, and we we’re able to spend time taking photos, making handprints and just spending those precious last moments together. Just hours after our arrival, Nairn slipped away peacefully in my arms. When Nairn was pronounced dead, I remember saying “I’m not giving him to you”, and I was reassured that no one would take him away.

When we were ready, we moved to the Rainbow Room, a special part of the hospice for families like ours. We were able to stay there until the funeral.

CHAS made what was the most harrowing time of our lives that little bit easier through care and compassion. They fed us, helped care for our eldest child and assisted with funeral arrangements. Nairn wasn’t treated as a patient but as an individual.

We’re indebted to everyone at CHAS for the support they gave us. Even now, I know they’re there for us when the dark days come, which is reassuring and helps us move forward in life.

We miss our boy every single day. Talking about him and keeping Nairn’s memory alive helps, and I’d encourage anyone out there dealing with difficulties, to tell their story too.