By Helen Sadler
My daughter Josephine’s own medical experiences inspired me to create a special character that has gone onto help many children and families across the UK.
Whilst I was pregnant with Josephine, she was diagnosed with Congenital Cystic Adenomatoid Malformation (CCAM), meaning there were cysts growing in her lungs. This was obviously very worrying news and at that stage we wouldn’t know to what extent her condition would affect her ability to breathe until she was born. Fortunately, when she arrived, she was able to breathe unassisted and didn’t require an emergency operation.
However as Josephine got older and bigger her breathing did become noticeably rapid and subsequent scans revealed an additional cyst hanging off her lung into her chest cavity.
It was at this stage she required the major operation to remove the cysts, without this intervention there was a risk they could become cancerous. The procedure was extremely intricate and pioneering so paediatric specialists attended from Birmingham to aid the consultant at Brighton Royal Alexandra Hospital throughout the surgery.
By now, Josephine was learning to talk and at a consultation we were shown pictures of the hospital and the machines, however the consultation wasn’t long enough for Josephine to absorb what she was being shown and told. My husband and I were keen to try and explain to her what was going to happen to help reduce the trauma of the experience, but we really struggled to find anything appropriate that was already available. So, to fill this gap I wrote a book based on the pictures we were shown featuring a little ‘Monkey’ also having an operation. We wanted to try to turn the experience into an ‘adventure’ for Josephine and not something she would go into full of fear.
My hand written storybook showed Josephine who she would meet and what she would see, hear and smell during her hospital experience, from having her temperature taken to waking up from anaesthetic. This definitely worked and she was excited about going to hospital, rather than afraid.
Fortunately, the surgery was a complete success and she came through it fantastically. The doctors treating her were incredibly impressed with the speed of her recovery and she’s now a normal, healthy little girl which we’re overjoyed about.
The other positive to come out of our experience was the success of the ‘Monkey’ storybook. The hospital treating Josephine in Brighton recognised the positive effect this age appropriate preparation had for her, so they asked whether I would share it with other families. We of course agreed and had a fundraising drive led by my husband which brought in enough money to print 10,000 copies of Monkey has an Operation, and a second book –Monkey has a Blood Test- soon followed.
Essentially, this was the beginning and from here ‘Monkey Wellbeing’ was born- the Monkey stories have grown into a wide range of resources, not just storybooks but activity guides, packs, a puppet and stickers.
Being adequately prepared can help children feel calm and in control during new experiences, it’s also something they have a right to, which as adults we have a responsibility to provide.
These materials are a tool for parents, teachers, healthcare professionals and everyone in between to help when approaching what can be difficult topics with children. The fact that Monkey Has an Operation is now being used in hospitals across the country is testament to their success in achieving this.
Another one of our great achievements so far was being involved with the production of an educational health and wellbeing resource for young children that has been distributed to over 19,000 primary schools across the UK http://www.monkeywellbeing.com/nhs-primary-resources-pack. We in fact were runners up at the 2012 PENNA (Patient Experience National Network Awards) awards with this resource pack.
Some of the other resources we now have available include ‘Monkey Has an Injection’, ‘Monkey Goes to School’, ‘Monkey Has Asthma’, ‘Monkey Visits Grandpa in Hospital’ and we also have a storybook coming up looking at emotional health and wellbeing in young children.
Child health education is such a vast area and something that previously has been lacking in appropriate materials .I feel passionate and hugely motivated to continue to develop the Monkey Wellbeing range to support children through as many life experiences as possible.
Monkey started out as a small thing to help prepare Josephine for her operation and it has just grown and grown and grown. I’m just so glad he is now helping so many children around the country. It is wonderful that something so positive for so many children has come from what initially was something so negative.
To see the full range of Monkey Wellbeing resources please visit www.monkeywellbeing.com