A few months ago, we had a visit to the Wilburton Beer Festival’s monthly committee meeting by Mag Hirst and her colleague to tell us about the Beads of Courage programme run by the Children and Young People’s Heath Service of Cambridgeshire at the Cambridgeshire Community Services NHS Trust. They started by laying long strings and jars of unique and interesting beads out on the table. Then came the photos of children and parents as they explained the programme and told stories that truly moved us all.
The Beads of Courage programme is designed to provide additional support for children undergoing serious illness and treatments. Major benefits of the programme are that it helps to decrease illness related distress, increase the use of positive coping strategies, helps children find meaning in illness and restore a sense of self in children coping with a serious illness. The children’s beads of courage collection help others to understand what the children go through. As their string of beads grows it is something they can use to remember and retell the story of their treatment. It is also about taking control of a tough situation. Each bead is their way of saying “this isn’t easy, but I did it.”
After holding and investigating the strings of beads while hearing the stories from the team we were amazed by the impact the beads made for the children. We knew we had to be involved and decided unanimously as a committee to make them the beneficiary of our 2018 raffle.
It was the individual stories that moved us so much, so we thought we would share one with their permission. This is Williams and his Mum’s story.
William and his Beads of Courage
In April 2010 Steve and I discovered we were expecting our first child. We were both very excited! At our 12-week dating scan all went well, and we relaxed knowing that our baby was growing well. Eight weeks later we went for our 20-week anomaly scan and part way through the scan the sonographer calmly explained that part of the baby’s brain was looking a little darker than she’d expect. She didn’t seem overly concerned but told us we’d need to come back in a week to see a consultant for another scan. We went away feeling quite calm and were reassured by friends’ stories of similar experiences where everything turned out to be fine.
A week later we returned to see the consultant. He scanned me again and said very little but told us he was referring us to Addenbrookes. When we got home we saw in my notes that he suspected the baby had Agenesis of the Corpus Callosum and Dandy Walker Malformation. A quick google search informed us that our baby’s brain hadn’t grown properly and if the diagnosis was correct he would have some level of moderate disability.
We were scanned a few days later at Addenbrookes and the Dr there confirmed the findings and referred us for a foetal MRI scan at Sheffield. At 22 weeks pregnant we travelled to Sheffield anxious about what was to come. We decided on that journey, unsure of what else was to come, the baby would be called William. The MRI scan took 30 minutes and straight afterwards a very kind Dr sat with us and explained his findings. Our baby did indeed have the conditions previously detected but he also had a more severe condition called Lissencephaly. The baby would most likely be severely disabled and battle with seizures. There was also a risk he might not even survive until birth.
The following weeks and months saw regular ultrasounds and follow up MRI scans. We mourned for the baby we thought we were going to have and we feared for the life of the baby boy we were having. We met with a neonatologist who told us what we could expect from having a child this poorly. We chose to continue with the pregnancy and at 39 weeks and 3 days I gave birth to William Orion Carlson.
Despite a straightforward arrival and needing little medical input at birth, things quickly became more intensive. Within 24 hours of birth William had his first NG feeding tube inserted and within days he was showing signs of seizure activity.
Fast forward five and a half years and we learned about a program called Beads of Courage through our community nursing team. We met with Mags who told us how it worked, and we set about creating a list, based on old diaries, blog entries, Facebook posts and emails, of what medical events William had gone through in his life. William was 6 in November and so far, he has earned 829 beads.
William is now a mostly happy, slightly cheeky little boy who loves hearing his little sister and relaxing on his bed. However, his brain malformations have left him with profound physical and mental disabilities. William is tube fed, suffers with daily seizures, is non-mobile and nonverbal, and struggles with his respiratory health. He faces so many challenges every day and we face challenges in caring for him and providing the best for him. He is such a brave boy and smiles his way through a lot of what he endures. If you spend any time with him, playing and interacting with him, he will quickly capture your heart.
William’s beads of courage represent so much of what he’s had to face; nights in hospital, OT visits, cannulas, surgeries, PICU stays, Physiotherapist visits, respiratory support, emergency hospital admissions, IV infusions, feeding tube changes, X-Rays, Clinic visits to see his consultant. They also represent some of William’s big achievements such as starting school and his first night away from his mum and dad when he stayed at our local hospice.
The beads show what a tumultuous first year he had, in and out of hospital with uncontrollable seizures and episodes of bronchiolitis. They show how over the next couple of years everything gradually calmed down as we stabilised his drug regime. They show how the last few years have seen a lot more complications thrown back into the mix as William has got bigger and poorlier.
The beads also mark significant events in William’s life, good and bad. Last October William was admitted to hospital with excessive sleepiness and a high heart rate. It was quickly discovered that William was critically poorly with Diabetic Ketoacidosis. He had developed Type 1 Diabetes completely unconnected to his other conditions. His pre-existing conditions complicated his diabetes care considerably. William now has a special Bead of Courage marking his new diagnosis. He also has beads representing each of his birthdays. When you have a life limiting condition birthdays are huge milestones to celebrate so it’s important they are marked on his beads. Recently William visited a local Brownie pack to help them achieve their disability badge and give them an insight into living with a complex medical condition. We took his beads of courage and the brownies were fascinated by them and what they represented. William got another bead of courage for his visit!
For us as a family, the beads are hugely important and significant. It is incredible that small simple beads can be collected and strung together to become something so powerful. William’s beads tell his story, they tell our story, in a beautiful way that communicates to people of every age something that is so often difficult for people to understand. The beads are like William’s medal or badge of honour showing everyone how brave he’s been and how much fight for life he has. The beads show professionals who are new to William’s journey just how far he’s come. The beads provide something positive to distract us when things are difficult, an x-ray becomes an opportunity to collect another bead rather than just another test.
For children like William, so much of life is a battle and a struggle but it just makes us take so much more joy in the good bits. The birthdays, the holidays, the smiles and laughs, the hospital free periods, the amazing people we meet along the way, the glimpses of William’s cheeky personality that peep through now and then are all so important. The beads of courage help turn some of the bad bits into more good bits.