On 21 July, Smile Train hosted a live, virtual celebration of 9 Reasons to Smile: Family Fun Activity Booklet, a new resource designed to promote psychosocial health and general cleft awareness. Through a variety of art activities and games, the booklet brings the entire family together to explore themes of self-esteem, happiness, self-expression, and community.
The virtual event convened representatives from the global health and global cleft communities to discuss art, health, clefts, and the importance of maintaining self-esteem and positivity through adversity.
Pamela Sheeran and Grace Peters of Smile Train kicked off the event by walking through the booklet and sharing the inspiration behind it: When COVID-19 forced most Smile Train partners to postpone surgeries and in-person treatments across the globe, many patients with clefts were left waiting at home in urgent need of support and connection.
“For some children, this will be their first introduction to using art. For others, it will be a reinforcement of using art and expression as a way to find the self-confidence…to discover their inner strength and health. It’s not just for when times are fun, but when times are challenging. This encourages them to connect with their families during those challenging times and talk about their emotions,” said Pamela.
An array of additional experts and special guests joined to share insights and comments, and children and families shared videos of themselves doing their favourite activities from the booklet.
Isabelle Wachsmuth, renowned artist and global health advocate with the World Health Organization, believes that there is no health without self-expression. “I believe that art is an essential part of health and well-being. Engaging in creative activities reduces stress and anxiety… it is a way to build relationships, share values, and spark a dialogue on how we live and what we want to achieve.”
Themes of community and family are woven throughout the booklet. Eric Hubli, a Craniofacial, Cleft, and Paediatric Plastic Surgeon at Cook Children’s Hospital and a member of Smile Train’s Global Medical Advisory Board, always reminds himself that he’s treating the whole child, not just a cleft – and that a cleft affects not only the person who has it, but often their whole family. “A child is not a cleft. A child is person, and in helping that child, we’re trying to… help [them] reach their full potential. I think it’s important everybody understand that a cleft can cause difficulties with eating, with speech, with hearing, and with psychosocial health. It affects the mom and dad, brothers and sisters.”
Recognising that family and community play an essential role in supporting those with clefts, the booklet aims to strengthen familial relationships through open dialogue.
Camila Osorio, a psychologist with Smile Train partner Fundación Clínica Noel, joined the webinar to give a firsthand perspective on how families have used the booklet to handle adversity together. She shared her experience with one family whose story she found particularly meaningful. “The mother shared that for one activity, the 'family meeting', they made space to sit down and work together. During that time, they were able to work through a lot of situations that had been coming up that they [the parents] weren’t aware of… it’s beautiful to see that it doesn’t just help one patient, it helps a whole family.” said Camila.
In addition to bringing families together, the booklet aims to create a larger community for patients with clefts. The next guest, Henry Baddour, is no stranger to the importance of building a community for those impacted by clefts. As the Founder and Executive Director of CleftProud, he has built the world’s largest community of those impacted by clefts. He was inspired to create CleftProud when, after one of the many surgeries he underwent as a cleft patient, he was unable to attend school for six long months. During his recovery, he searched for a community who could understand his experience. When he was unable to find what he needed, he decided to create it himself.
“Social media allows us all to come together and can be so impactful for someone affected [by a cleft]. That’s why this book is so great, especially when people are at home. They can use this book and feel connected to the cleft community,” said Henry.
Riley, a Smile Train Student Ambassador born with a cleft lip and palate herself, also works to raise awareness of clefts. Before she began working with Smile Train, she had never met anyone else born with a cleft. “As a Student Ambassador, I organise fundraisers and educational events in my community… I’m excited about this booklet because I wish I had this booklet when I was a smaller child. It would have been a great thing to do with my family and a great way to build a community that I didn’t really have at the time.”
Finally, Chelsea and Jessi, members of Smile Train’s Cleft Community Advisory Council, joined to share their insights as mothers of children with clefts. Jessi started getting involved with Smile Train after her daughter was born with a cleft. “As we start to talk about more surgeries – we’ve been through three now and we have more coming up – I’m looking forward to using this booklet to help her get some of those feelings out and feel confident as she goes into those procedures.”
Chelsea, mother of 4-year-old Luca, also got involved with Smile Train for support after her son was born with a cleft. She recalled the emotion and the worry she felt when her son shared a baby photo with his preschool class — while Luca’s family had always celebrated his cleft and his strength, sharing a pre-treatment photo with a classroom of three-year-olds was a different story. Chelsea was afraid that they might speak without thinking. While his show-and-tell went well that day, Chelsea foresees similar moments of worry throughout her son’s life and she hopes that resources like the booklet can serve as a tool for education and awareness. “As we navigate these years going forward, and as kids get more verbal and curious, we’re so grateful for resources like this.”
Grace Peters, who was herself born with a cleft lip and palate, recalled similar worries from her own childhood. “I remember when I was in kindergarten... I would be so worried about people looking at my cleft, and I just didn’t know what to say. I was five years old. My mom said, ‘Grace, your scar is your story starter, and it leads all the way to your heart.’”
At Smile Train, we hope that this booklet serves as a story starter for families and patients alike, helping them to tell their story and express their feelings. We hope this booklet and art activities like it empower children and families, inspire our global partners, and raise awareness about the creative ways that psychosocial programmes can be offered to children and families. Alongside partners like Fundación Clínica Noel, we are piloting impactful programmes for psychosocial health and we will continue to build programmes that reach patients around the globe.