Access the original journal article here: https://journals.sagepub.com/doi/10.1177/10556656211043417
Abstract: Kenny Ardouin grew up in East Sussex in the United Kingdom (UK), before moving to New Zealand, which he now considers home. Having been born with a cleft lip and palate, Kenny has a personal and professional dedication to the field. He served as CEO of the charitable organisation Cleft New Zealand and recently completed 3.5 years as the Adult Services Manager for the Cleft Lip and Palate Association in the UK. Kenny works as a speech and language therapist, and is studying a Master’s degree part-time, focused on the psychological impact of speech differences in adolescents and adults born with a cleft. Kenny is also a radio broadcaster and editor and a freelance public speaker. In this heartfelt and informative invited editorial, Kenny reflects on how his treatment journey unfolded as a young adult and offers key learning points for all health professionals wanting to become more person-focused in their clinical practice.
Over the past 18 months, the entire world has had to learn to live with an inherent level of uncertainty as coronavirus-2019 (COVID-19) has inflicted fluctuating levels of chaos on our daily lives. I realised that weathering periods of uncertainty was something that my cleft experience had made me well placed to manage. It was a stark contrast to witnessing people who were ordinarily so incredibly well organised become overwhelmed by the uncertainty and the inability to make definitive plans due to COVID-19.
Learning to live with uncertainty from an early age is part of the cleft experience. Although growing up you have a vague timeline of your planned treatment, the reality is that it is hard for anyone to give you much certainty on when surgeries will actually occur. For example, with orthognathic surgery, I remember being told from about the age of 12 that it would happen “once you stop growing and are shaving twice a day.” Being relatively fair-haired, I’ve never ended up shaving twice a day (in fact, since COVID started, there were periods where my face had not seen a razor even twice a month!). I did stop growing in my late teens and I was able to have orthognathic surgery in my early 20s. Although I suppose I had had over a decade to get ready for orthognathic surgery, I still felt somewhat ill-prepared for what lay ahead of me when it finally was time for the procedure.
Orthognathic surgery was the first major procedure that I had undergone as an adult. I had been receiving preparatory orthodontic work, and other dental procedures, but nothing as big as this. Everyone involved had been very friendly and supportive, although in hindsight, no one really prepared me for the transition from paediatric treatment to adult treatment, and I would encourage paediatric health professionals to take that extra bit of time to support young people as they transition into adult services.
Looking back on the lead up to orthognathic surgery, a lot was being asked of me from a very early age. I was having to make big decisions about my future treatment with little support, and I am not sure that I really had the insight at the ages of 12 to 18 years to fully appreciate what I was agreeing to or what was required of me. I had my family and the cleft team to talk things through with, but both were motivated toward engaging with the proposed treatment plan and so I felt I did not have anyone impartial to seek advice from—this is just one example where the expertise of a clinical psychologist would likely have been invaluable.
Up until this point, there had been a passivity to my cleft care—I wasn’t the one deciding whether to undergo treatment, rather I just had to show up and everyone else would take care of the rest. This extended to consultations too—doctors and medical staff would talk about me as if I was a tired piece of art that they wanted to lovingly restore, and they’d discuss with one another all their ideas of how to create “Kenny 2.0,” a more aesthetically pleasing, better-sounding (and presumably more confident) version of the existing me. I remember feeling a bit confused by this; on the one hand, at school the people bullying me at the time were being told there was nothing wrong with me and that I was no different to them, yet on the other hand, the kind, caring cleft team who I held in very high esteem were also commenting on the same parts of my face as the bullies and stating that they should be changed. This was a lot to process as a 12-year-old and I couldn’t help but feel we were conceding that the bullies were right in their thinking, even though they were being chastised for saying it. This is another example of when the support of a psychologist would have been welcomed.
As I became an adult, I took a more active role in continuing the care pathway. I realised for treatment to be a success, it needed much more than me to merely show up. It required dedication from me with my oral care and diet restrictions, etc. It also would mean balancing my roles and responsibilities elsewhere in life with those of treatment. This is something I could have benefitted from receiving some support from the cleft team with. Once I had psyched myself up to go ahead with orthognathic surgery, I had to organise the logistics of taking up to 6 weeks off. I was fortunate that both my employer and the University were empathetic and ensured that I could have the time that I needed without being unduly penalised, although I suspect not all employers would be as understanding. For reasons that were not the hospital staff’s fault, but also were most definitely not my fault, the date of my orthognathic surgery kept changing. I initially had a date in June, then a couple of days before the surgery, it was moved to July. Then the week before that surgery date, it was also cancelled and moved to August. I cannot understate the distress that this caused. After having got myself mentally prepared for the operation and also organised all the logistics of taking University exams early, arranging leave and cover at work, etc., having surgery dates changed by the hospital at the last minute created a lot of anguish for myself and employer alike. While the hospital was apologetic, there was no appreciation for how significant these setbacks were, and no support was offered to help with this. This definitely was a period where I felt that I was a passenger in my own life and felt the burden of care.
The day of the operation was quite surreal. I remember it being a cold wintery Monday morning as my mum drove me to the hospital and I was looking at people in all the other cars with envy; they didn’t know how lucky they were that they were getting to do something as mundane as going to work, rather than having to go to the hospital. That appreciation for mundane normality became greater recognised by the general population during the COVID pandemic; but for me, the days where I can do all normal things, such as going to work, have been a reason for celebration for much longer.
Once I arrived, I was admitted to an adult ward for the first time, which was an experience in itself. Everyone was very friendly, but some things were a bit different in my case, such as having to share a room, wear a rather revealing gown, and walking to the operating theatre rather than being wheeled in a bed. These are minor changes from my recollection of previous treatment, but on a day when anxieties were already high, it would have been great to have been informed by the treatment team before the surgery exactly what the process was going to look like rather than it being a series of quirky surprises.
I still had anxiety that the operation would be yet again cancelled at any minute up until I was finally on the operating table being put to sleep. Fortunately, this time it did go ahead. Although I had a long road to recovery ahead of me, there was an overall sense of relief. The operation would be done, a weight was off my shoulders, and for now all I had to do was drift off to sleep and rest. This was the beginning of the end of a long treatment pathway I had been on since the day I was born.
To summarise, I believe that there are a few take-home messages for cleft teams with the benefit of hindsight. The first would be to be mindful of the language you are using—I may only have been 12, but I knew I was being spoken about without being part of the conversation. Although I may have been too young to consent, I was certainly capable of assenting to (or refusing!) treatment, and I would have appreciated my team asking me about my ambitions and fears. I also would encourage teams to not underestimate how overwhelming transitioning to adult care is. As health professionals, we become desensitised to how intimidating the hospital can be, but walking into it as a patient for the first time wearing nothing but a rather immodest gown that says “hospital property” feels scary and undignified. Knowing what to expect goes a long way to easing that anxiety. Next, an understanding of where treatment fits within somebody’s life right now is important—there’s no “good time” for surgery in a holistic sense. Physiologically it was an ideal time; however, understanding and seeking to minimise the psychological impact that the upheaval has on somebody in their early years of study, career, and relationships is paramount. Which leads to my final point: clinical psychology. This was not something that I had access to during my cleft care, yet having had the opportunity to receive it later in life, I see it as indispensable to a positive holistic treatment experience.
Reflecting back upon my cleft experience, I realise I have a lot to be grateful for. I am grateful to have had access to high-quality (and free) clinical care in both the UK and New Zealand over the past 30 years. I am grateful to have been looked after by such caring and compassionate cleft teams. I am grateful for the unwavering support of my family and friends. I am grateful to have grown up in an increasingly accepting society that embraces difference and the unique contribution that individuals make. I am grateful for the people I have met along the journey, and the educational and career opportunities that I am unlikely to have otherwise sought out or been offered. I would not go so far as to say I am grateful to have been born with a cleft, and I do still occasionally ponder what my life would have looked like had I not been. However, over the years I have come to accept who I am, and most importantly, I like who I am and I no longer feel a need to change who I am. I am happy to finally have embraced cleft as a part of my identity, but it is far from being the thing that defines me.
Looking to the future, I do still have a few unanswered questions—will my children be born with cleft? If so, how would I feel about that? Will I need further treatment in the future? Although these questions do not yet have answers, it is reassuring to know that with every year that passes, we increase our knowledge of cleft and the impact it has on all those affected by it. It is reassuring to know that a treatment experience tomorrow is going to be even better than yesterday.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
The authors received no financial support for the research, authorship, and/or publication of this article.