Stacey Hussell on Compassion and Her Cleft Journey

Stacey Hussell is a member of Smile Train UK’s Cleft Community Advisory Council. For years, she kept quiet about her experiences with having a cleft. The birth of her son Dylan — who is also cleft-affected — inspired her to start sharing her story.

I had my first cleft surgery at four months old, on my lip, followed by my palate at 15 months.

Aside from my medical procedures and appointments, as a young child, having a cleft didn’t really affect me at all. I was confident and happy. I loved dancing!

Things changed toward the beginning of secondary school. Other students started to treat me differently. Occasionally, they would ask me questions about my cleft, which I was always happy to answer.

But more often they would bully me, staring at me and calling me names.

As a result, I stopped liking the way that I looked or smiled. For years afterward, I would try to cover my mouth. I would often feel like everyone was staring at me, even if some people probably weren’t.

During university, my confidence slowly started to return, but it took years until I felt fully like myself again.

After graduation, I became a photographer, including working in medical photography at a hospital. In the back of my mind, I knew I wanted to use my skills to help other people with clefts — but I didn’t quite know how.

In my personal life, I continued to make important progress in my healing journey. I met my husband in 2014. Two years later, our wedding changed my life. That day, I truly found confidence again in my smile.

Starting a Family

In 2018, we had our daughter, who is not cleft-affected.

However, during my second pregnancy, we went in for the 20-week scan, and they detected a cleft lip. Further scans confirmed it: Our son Dylan would have a bilateral cleft lip, and probably palate as well.

The rest of the pregnancy was a very difficult, worrying time for both me and my husband.

That said, something unexpected happened from getting the news about Dylan: I finally had a sense of how to use my photography to help others with clefts.

I started by creating an Instagram account before Dylan was even born so that I could share photos of him, his journey, and our story.

At the hospital where I take medical photos, I also set up a service called Smile Journey, where we offer a nice keepsake picture of baby and child cleft patients for their parents to take home.

In my private photography business, I started a personal project called Changing Smiles, taking pictures of cleft-affected babies, individuals, and families. I plan to donate 10% of every photoshoot to Smile Train.

Making Yourself Heard

Dylan’s birth inspired another big change: for the first time, I started talking about my own cleft experience.

This was a complete reversal from my childhood and teenage years, when I would never speak to anyone about the bullying I endured. Now, as an adult, I am learning how powerful and healing it can be to share my personal cleft experience and listen to others talk about their own.

I’ve joined Facebook groups: in particular, the Cleft Parenting Community and the Trauma-Informed Cleft Community, both set up by artist and cleft advocate Katie Manning. They’ve been complete gamechangers for me, and I can’t thank Katie enough.

Through the learning I’m currently doing about trauma — how it affects the body and nervous system — I’m making incredible discoveries about myself.

My learning has helped me realize how much I’ve overcome, and how resilient I am. It has given me far more self-love and has taught me greater compassion and empathy for others.

I now share my own story at the hospital, where I meet a lot of babies, children, and adults who are cleft-affected. I remember chatting with one teenage girl; she was considering jaw surgery, which I had myself — I’ve had 13 cleft-related surgeries in total — so I took the time to listen to her and share my own treatment journey. I know she was grateful for that conversation, and so was I.

The Power of Community

As a Smile Train Ambassador, I want to help raise awareness and support other cleft-affected individuals and families.

Most recently, I was involved in Smile Train UK’s Beauty in Every Smile campaign, which was incredible — and something I probably wouldn’t have done three years ago. Just another sign of how far I’ve come in my own healing process.

I’d love to travel around the UK, and the world, with my photography project Changing Smiles. My ultimate goal is to fill the first page of Google’s search results for “cleft” with beautiful images, replacing the sterile, clinical, sometimes scary looking ones we see today.

If I could offer advice to someone who is navigating their own cleft journey, I’d tell them to reach out to others, whether that be family, friends, or community groups for cleft-affected individuals. It’s all about connection. Share your story and talk to others about your experience. If you can find your people, you take a big step toward finding acceptance of yourself and discovering your own confidence.

I’d also remind them that they are beautiful!

For families, my advice is to take all the help that is offered, and do not be afraid to talk about it. Trust your instincts. If you have other children, be open and honest with them and involve them with everything you can. We took our daughter along to Dylan’s 4D scan. We show her photos of me when I was a baby and of other children with clefts. We read her books about it, and my mum also bought her a doll with a cleft.

Connect with other parents going through similar things. Open communication and positive affirmations help so much. Even having other mum friends who tell me, “I see you,” “I hear you” has been so powerful and validating for me.