This is the story of a beautiful little girl Rowan, who sadly passed away in November 2012, as told by her mum Sarah and dad Matt;
“Rowan was born on 26th May 2011, she was a beautiful baby and was such a happy little girl always smiling and chattering away.
“When she was just ten months-old she was diagnosed with Spinal Muscular Atrophy type 1b which is a muscle wasting condition. This left Rowan with very weak muscles and as a family we were left with the prognosis that babies with SMA rarely live to see their 1st birthday. Therefore Rowan, at the point of coming to Bluebell Wood, had done amazingly well as she was just under 18 months old. She was unable to stand or sit, however for a baby with this condition she was lucky enough to have movement in her arms and face and the most amazing repertoire of sounds and chatter. She enjoyed life with the assistance of a special chair that helped her to play and be involved in the world. SMA only affects the muscles in the body, the brain is completely unaffected.
“We came to Bluebell Wood on 2nd October 2012, following stays in Barnsley Hospital and Sheffield Children’s Hospital as Rowan was very, very poorly. She had had pneumonia for the second time in her short life and this time her lungs were struggling to recover.
“At Bluebell Wood we made the very difficult decision to remove the non-invasive ventilation support from Rowan as she was so unhappy and unsettled on it. We were told by doing this that she would only survive a few hours. This seemed the case and all her family sat round to say good bye to her.
“It was at this time that Rowan’s Nanna suggested she may like a bath and to our absolute relief this brought her round. She went from strength to strength and on 16th October 2012 we went home, visiting Anton the Consultant at Bluebell every two weeks and often accessing support over the phone.
“Rowan loved people and always had a smile and wave for everyone. She really enjoyed playing, reading, singing, painting and bubbles! We always had lots of fun playing in the Jacuzzi at Bluebell Wood as well as always being included in various activities such as storytelling, sensory play, music and baking. We regularly walked around the remembrance garden where Rowan now has a pebble. It’s such a peaceful place and she adored being outside, always smiling and looking at the sky and trees.
“Rowan peacefully passed away in our arms at home on 23rd November 2012 surrounded by love.
“After Rowan had passed away we were visited at home for her certification and then given options of what we would like to happen next. We decided to take Rowan to Bluebell to be in the Forget Me Not Suite, (this is an end of life suite where your child can stay in a special room and you can stay in the adjoining room so you’re close to them). You can stay here while all the relevant arrangements are made
“Knowing exactly where she was and who was near her was a great comfort to us.
I imagine we got to do a lot of things you wouldn’t normally do had she gone to a funeral home. Friends and family could visit at any time of day to say goodbye to her.
“Being at Bluebell at this extremely difficult time meant we didn’t have to worry about home life, about food and everyday normal things.
“The staff made prints of Rowan’s hands and feet for us, dressed her and we plaited her hair as well as saying our final goodbye as we laid her into her casket.
“Even now some months later, we know we can access the support of the specialist services at Bluebell Wood to help us cope with the loss of Rowan and know the pebble we placed in the remembrance garden can be visited and be a treasured memory of her short but special life.
“Rowan delighted everyone she met and enjoyed her short life to the full. She made the world more fun, more interesting, more beautiful and above all, more joyful for everyone close to her.”