At Smile Train UK we are very proud of our family of cleft Ambassadors, who have all had a personal connection to the condition in some way. Some were born with a cleft themselves, whilst others have had a sibling or a child born with cleft – so their understanding and knowledge of the condition is vital in helping us to shape our charity programmes, communications and campaign efforts.
This month, we are delighted to welcome another inspirational member of the cleft community into the Smile Train family – Jen Cross.
Thirty-two years ago, Jen was born in the UK with a bilateral cleft lip and palate, which required a number of surgeries and treatments throughout her childhood and teenage years. Fast forward to today, Jen has a two-year-old son named Will, who like his mum, was born with a bilateral cleft lip and palate.
Drawing experience from her own personal journey, as someone who has been affected by cleft, and who’s given birth to a child with a cleft, Jen now devotes much of her time to raising awareness of the cleft condition and has also set up a specialist website and brand called Don’t Get Lippy which offers helpful advice, resources and unique products for parents who are raising a child with a cleft. She also has IGTV videos, a YouTube channel and a podcast (found on iTunes & Spotify) which talks about a variety of subjects surrounding the cleft condition.
To celebrate Jen’s new Ambassador role, we have invited her to take part in a Q&A with us for this month’s column with Charity Today:
- Welcome to the Smile Train family Jen! You had surgery on your cleft as a baby, but still treatments and therapies growing up. What impact did this have on your childhood?
“Thank you! I was born into a Forces family, so we moved around a lot when I was young. I was constantly meeting new people, which really helped me to grow and encouraged me to be confident – so having a cleft scar and requiring treatments didn’t really impact me too much at this point.
“My first real challenge with the condition came when I reached secondary school, where I experienced bullying for the first time. Peers would comment on the way I looked and made it clear that I looked different to everyone else. This was hurtful, and it really knocked the confidence I had built up.
“When I was 16 years old, my family and I moved to Cyprus, and this is where I really learnt to embrace my cleft – and myself. I decided to accept that my cleft scar contributed to who I am and that I didn’t need to worry about what other people thought, as long as I was happy in myself.
“Since this change in mindset, I grew in confidence, worked in various jobs roles that were public-facing, started my own business, and have a beautiful family – it really has been life-changing, and I want to help others who might be feeling unconfident or isolated to feel the same way.”
- How did you feel when you found out that your baby boy, Will, was going to be born with a cleft?
“Will’s diagnosis came as a complete surprise to me and my fiancé. It had never crossed my mind that he could be born with a cleft. I always asked when I was growing up if I would ever have a baby with a cleft and the response was always ‘it’s not hereditary’.
“When my sonographer told me that a cleft lip was visible, I responded calmly, thanking him for letting me know. It wasn’t until after I left the clinic that I fully registered the news.
“For days, I didn’t want to see or speak to anyone because I felt such an overwhelming feeling of guilt for passing the condition onto him, and a sense of shame that I couldn’t seem to shake off.
“I started to talk to other people within the cleft community about the diagnosis, and the more I spoke to people, the easier things became. My idea of the ‘perfect baby’ had changed, but that didn’t mean my baby wasn’t going to be perfect. (And he absolutely is!).”
- We love your brand ‘Don’t Get Lippy‘ – what inspired you to create it?
“Thank you! After I found out that Will had a cleft, I began to document my pregnancy journey – what I found challenging, the prep work that I could do to prepare for his arrival and what people might be interested in compared to other pregnancies. I wanted to document everything so that I could offer support to others who might be going through the same journey that I was.
“‘Don’t Get Lippy’ was a phrase that kids used to say to me all the time as a teenager. At that time, I wanted the ground to swallow me up as I walked past someone shouting it. In 2019, a friend encouraged me to flip it into a positive and assertive statement, rather than keeping it filed in my brain as a bad memory. My website, podcast and particularly Instagram is constantly updated and evolving to educate and inform those who don’t know about the condition or want to know more, and support and empower those affected – more recently, I am focusing on support for mothers from the cleft diagnosis onwards.
“I feel I have a lot of experience and advice to offer, and so I want to use it as a platform to share my story, and to help others with theirs.”
- What advice would you give to other mums who have recently been diagnosed with, or have given birth to a baby with cleft?
“Well firstly, don’t panic and try and avoid thinking it’s something you have done, or not done. It’s absolutely not the case, although I felt exactly that way.
“For me, talking to other people really helped. Whether it was with friends and family for some extra support, with experts to try and make sure I had all the information I needed or to other parents in the community to learn how they dealt with the diagnosis.
“I advise all cleft parents to look for and embrace all the support that is available out there. Many people are surprised to learn that a cleft lip and/or palate is the most common facial birth defect in the UK, so there are lots of people going through the same experience you are. Find these people, ask them questions, learn the tips and tricks they have – everyone is so understanding and always want to support others.
“Acknowledging and accepting what was happening was what helped me get over those first hurdles.”
- Why did you decide to become an Ambassador for Smile Train?
“We’re very lucky here in the UK that, during our prenatal scans, a cleft is something that is routinely looked for and can be detected – this allows us to spend time preparing ourselves for when our baby arrives, we’re offered specialist feeding equipment and have a whole team of people to support us, and the baby. We’re guaranteed treatment, surgery and support, and mostly free on the NHS. Not all parents and babies who are affected by the cleft condition around the world are guaranteed the same access to surgery, support – and understanding of the condition – which is heart-breaking. Knowing that cleft affected children can be ostracised or excluded from their communities is something that I can’t ignore.
“I came across Smile Train a few years ago and recently learnt about their sustainable ‘teach a man to fish’ model, which provides training, funding, and resources to empower local medical professionals in more than 90 countries – so that they can go on to provide free cleft surgery and comprehensive cleft care to babies and children in their own communities. Helping countries, healthcare professionals and individuals to learn how to care for these babies and children is absolutely amazing and have championed the charity ever since.
“I was so delighted when Smile Train approached me recently and asked me to join their family of Ambassadors. The charity helps to create new smiles for children living all over the world through their ongoing work. What better way to support the cleft community, then to help them on this mission!”
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