Helen Sadler, creator of the ‘Monkey Goes To Hospital’ storybook series designed to inform and reassure children about hospital visits, has written the moving story of how the cuddly companion was created after her own experience of her daughter Josephine’s treatment for a rare congenital lung condition.
This week I was asked about dates that were important to me, that I thought about every year and had some significance… Of course the reference was to how Monkey came to be… And I could not recall dates, even years into mind. This I think has been my self-defence mechanism.
I remember our 20 week scan on April 19th, when everything changed. I remember the anticipation and excitement of finding out whether we were going to have a boy or a girl, only to be met with an ‘oh’… Then the regular scans to see if the rare lung condition (CCAM, Congenital Cystic Adenomatoid Malformation) had taken over the lungs entirely…. We were very lucky. I remember getting ready for December 19th, for the first operation, only for it to be postponed as flu had taken over the children’s hospital and it was full with adults as well; of course that’s the last thing you need to be around if you can help it with a lung complaint.
Aside from that I don’t remember dates, except of course, our daughter’s birthday. Thankfully her lungs opened successfully so the surgeons who were on standby to operate if necessary were not needed; neither were the terrifying beeping machines that kept flashing or all the other emergency paraphernalia in the room when she was born.
I remember having acupuncture to bring her on before she was induced and the determination to have no drugs in case I didn’t know her for long.
I remember the surprise at being let home on my birthday and not having people with us…. We had a new baby, wasn’t anyone going to tell us what to do!? Really, we can keep her!??
Anyway, thankfully we carried on and our daughter was not too symptomatic, I convinced myself that she was ‘out of breath’ after running as she was putting it on! How could she have been??
At 18 months she went for her first operation as her body was strong enough to take the trauma. It was appalling. We had spent time being scanned and having appointments and she walked to hospital for her operation. We had prepared her with role play, a doctor’s kit, stories, and I wrote a book based on the photos taken at the hospital; these saw us through. The story book also meant we didn’t have to explain anything to anyone…so I didn’t have to talk about it… Just be positive.
My husband was amazing – he had researched online, joined forums and spoken to the consultants about various options to deal with the operation. This led to our little girl having pioneering surgery via keyhole rather than three 4 inch incisions down her chest. Mr Kali, Mr Mohammed and Mr Parikh were incredible; our little girl was the first child to have this surgery at the Royal Alexandra Children’s Hospital in Brighton.
We went to the airport to watch planes the day before the first operation and avoided people who could have germs! I haven’t mentioned not seeing anyone in case they were poorly for two years, in case she picked up a bug that could settle on her chest. Or the shock when she had a CT scan that showed an additional cyst connected to her other lung, all connected to each other; lots of things could go wrong. Oh, it was horrible. However as an ex- primary school teacher, nursery nurse and of course a mummy, I just thought we had to make it the best possible time and an adventure for her just in case this was ‘it’.
Anyway, the day finally came and we walked to the hospital; our neighbours were fab and some came out to see us off. Our daughter was amazing and skipped down the road holding her doctor’s kit. She sailed through, leaving daddy in the play room as I took her down to surgery. She sat on my lap as I sang her ‘You are my sunshine’… She was so brave. And we just had to sit and wait.
We were expecting a 7 hour op, yet after four hours had to walk down to see what was happening, and I saw Dr Kali at the nurses station.
My world stopped and I thought we had lost her. He came running down the corridor and picked me up and took me to Daniel; he said that she was fine, it was OK, come to recovery all is well, don’t worry…. You just can’t imagine how that felt.
She was just incredible; she wasn’t phased by the machines, the noise, the tubes…the prodding, the poking (though she really didn’t like having her chest drain taken out!). In fact we had to run up and down the corridor with her with a chest drain attached and believe me, she is fast!
We painted in her special hospital cot, we cuddled, we slept, we played, we blew lots of bubbles to build up her lung capacity, we had scans and X-rays and we were home within just days, not the weeks we had been told. No one could believe it…
We then waited another 6 months, giving her body a chance to be strong enough to take the next operation, reading our story, role playing hospitals ready for the next op. We encouraged her to be proud of her ‘stars’ on her chest not scars, and waved at ‘my doctor Kali’ every time we passed the hospital. This was another tricky operation as the cyst (the size of a sausage apparently) was attached to her diaphragmatic aorta – great!
We had come such a long way by this point and been so petrified I thought that she wouldn’t have known that this wasn’t the ‘norm’ for everyone. Let’s forget the crying in the shower, the constant worry, the not talking to anyone! And the adrenalin pumping positivity.
We went in (I don’t remember the date), and having been told we would be in for at least two weeks, we came home after 18 hours…. The operation was a huge success; the surgeons were amazing and the extra bits she didn’t need had gone. It was amazing. A few new ‘stars’ but that was it.
The consultants had seen her handwritten storybook alongside the photos taken by staff at the Royal Alex, and loved it. They asked if I would share it with other children and their families as they were so impressed by her reaction; she was so well prepared, at ease, confident and assured of her surroundings.
My husband enlisted our friend Alex and they walked 100 miles to raise money to produce 10,000 copies. My friend helped design the layout of the story book and it went from there.
Our experience had proved to me that there was nothing that showed children everything realistically, that could explain to a young child what was going to happen to them. Of course, Miffy, Maisy, Topsy and Tim were brilliant and we read them a lot, but nothing really realistic. So that is how Monkey started. My husband designed a monkey for me which we had made and then we were commissioned to write ‘Monkey has a blood test’.
Since then we (Monkey and I) have been lucky enough to meet fabulous people across the NHS and from the ACCN (Association of Chief Children’s Nurses) who have seen how Monkey’s cheeky and honest character can help encourage children to use the NHS wisely.
Monkey’s NHS Explorer primary school resource pack has been produced and sent to every primary and special school in England (over 19,000) with Monkey puppets, a song and film clips as well as a term’s worth of work for 6 year groups, linked to the National Curriculum. ITV and ITFC donated BSL translation and subtitling to the film clips so they are accessible to all. We came runner-up at the 2012 PENNA (Patient Experience National Network Awards) awards with this resource pack 🙂
Birmingham Children’s Hospital have piloted ‘Monkey visits the Emergency Department’; we have designed a version of the Friends and Family Test which allows children who may not always have a say, a chance to offer their feedback; and we are currently writing ‘Monkey has asthma’, ‘Monkey has an injection’, ‘Monkey has a hearing test’, ‘Monkey has diabetes’… The list goes on as Monkey walks hand in hand through life’s experiences. He is even starting school in September!
All that aside, we now have Tiny Monkey, and I found it very hard to connect with my bump. I had counselling throughout my pregnancy as I suppose my self-defence mechanism kicked in and I was worried to death that I would have to go through the same thing again – what if they found something at the scan?
It is only working with Monkey and sharing our story that I realised that so many people face the same thing. My background has really helped along the journey and I am totally passionate about informing children and their families about what they may face and what to expect with honesty and positivity.
Our daughter has now been signed off for another two years and is fine; she really is fabulous! Her peak flow is as good if not better than a child with two full lungs! Our son is also amazing.
We are so very lucky. x
I am Mummy as well as a trained Nursery Nurse and Early Years teacher. My family on both sides are either teachers or work within health – which is quite funny really, but no surprise! I live at home in East Sussex with my wonderful patient husband Daniel, and our two little monkeys Josephine and Buzzy. Not enough hours in the day but all good fun at Monkey HQ!