Cleft Lip and Palate Presentations

CLAPA Conference – 8 July 2017

Thank you very much to all those who came along to the CLAPA conference in London on Saturday – it was fantastic to meet you all, share my story with you, share stories together and to hear all of the other amazing speakers too!

Below are the PowerPoint slides from the day available for download for future reference. I have also included some transcripted portions of the speech which have been requested.

Photos credit: Ryan Trower Photography

PowerPoint Slides Handout

Transcripted Portions of Speech

On Parents

I have a great deal of respect and gratitude for my parents who put so much into providing the best for me. I was their first child, they had no idea that I was going to be born with a cleft, yet managed to quickly put aside their own shock and grief that they weren’t getting the perfect baby that they had imagined, and focussed on my welfare and loved me just as much.

They were on a steep learning curve, where information in 1991 was much more limited than it is now in the modern age of 3D scans and genetic testing etc. Not only did they have to very quickly skill themselves up on cleft lip and palate, they had to inform others too, who were not necessarily the most supportive.

We’ve never really discussed it, but I feel that my parents harbour some guilt, somehow feeling that they may be partially responsible for my being born with a cleft. I wish they wouldn’t feel guilt – I certainly do not blame them for anything, all that I ever knew as a child growing up was an environment of love and support.


On Becoming Responsible for My Own Treatment

In NZ, like here as far as I’m aware, once you turn 16, the ownership of healthcare changes from parents to patients. When I turned 16, it was no longer up to my parents as to whether I was going to receive further medical treatment, now it became my decision.

By the time I was 16, I just wanted everything to stop. And I think I somewhat naively thought that if I just ignore it, it will all go away.

So when I turned 16 and they asked me if I wanted orthognathic surgery in a couple of years time – what do you think I said? I said “no way”. 16 year olds have a lot on their minds at the best of times, and looking back on it, I just didn’t have the skills to make that decision – no one had counselled me and help me think through that decision – I didn’t really want to think beyond about next week at that point in my life.

Looking back on it now, that must have been so frustrating for my parents – they had done everything that they could for me over the years, fought my corner and now I was throwing it back in their face without realising what I was doing. I think in hindsight this is where having had some psychology input would have been so helpful as they could’ve spoken to me and realised that I had a lot of anxiety about further surgeries, as well as not really understanding what it was all about. So in 2007, I said no, and I held that stance for three years.


On the Emotional Journey

It’s funny, it’s only now as I’m this much older, that I’m finally able to look back and realise what an emotional journey as well as physical one it has been. Going back to the medical slide for a moment – this is the first presentation I’ve given that doesn’t have a “still to go” slide following this slide, and I’m wholeheartedly hoping I don’t ever have reason to put one back in! I am hoping to soon be finally discharged from the cleft clinic and free to get on with the rest of my life – a life I hope doesn’t require regular medical intervention!

And I want to talk about that concept for a minute, of being discharged and getting on with the rest of your life, because it’s a strange one. I was asked a couple of years ago whether I think people with incurable conditions are happier than those with a condition such as cleft which is treatable and who will one day be discharged and free. I’ve pondered this question for a long time and I don’t really know the answer, but what I will say is this.
If you know that one day the remedy is coming, you perhaps don’t always live in the present and I know this is true of me. Instead you look to this arbitrary time in the future instead and naively assume that everything will just fall into place for you. The health system reinforces this to you too and my message to any health professionals or aspiring health professionals would be to really focus not only on the future and the end result, but also on right now.

I’ve lost track of the number of times I’ve heard well intentioned phrases such as ‘after the surgery, you will look amazing’, ‘after the braces come off, your teeth will look normal’ etc. as they too were working to create Kenny 2.0 – the Kenny of the future, not Kenny as he was back then. Looking back, I am 26 now and in some respects I have achieved a lot for my age, and having a cleft has been a fundamental part of that, and I am proud of what I have achieved – I’ve been New Zealand’s youngest charity CEO, I have a speech therapy job that motivates me to get up in the morning, I have my own radio programme, I have educated many people on cleft. But, when I look back on my own time, there is also a lot that I haven’t achieved because I wasn’t living in the moment, a lot of what I did, I did in part because it gave me purpose when I couldn’t find purpose in the more age typical ways.

That list I just read out has one very obvious thing missing from it. Talking to girls/young women is terrifying – 6 or 7 years ago, there is no way I would’ve been able to stand up in front of a group of young women and speak – now I do it every year as I take the cleft portion of the speech therapy course in New Zealand and that just seems to be a very female dominated audience! I used to think “Why would anyone be interested in me?” – that is an unhelpful belief of inadequacy that stayed with me for years, and a belief that I am still dealing with the consequences of today as I slowly now realise that was a silly belief to hold and am now having to work much harder to build my confidence up and fix the situation that I created for myself. I’m frustrated with myself for believing that, because over the years, in different settings, I have met many incredible young women, who very quickly saw through the exterior and saw me for who I really am. How ignorant was I to think that it’s all about looks, it really isn’t. So, foolishly, my own self doubt caused me to miss the boat with dating. Robbed me of the confidence to ask the girl I liked in high school to the school ball, even though she would have said yes.

I’ve missed a few opportunities with incredible people with whom I share a lot of hopes, dreams and ambitions simply because I never asked the question, or asked when it was much too late. So, why didn’t I ask? That was because I would reason with myself, that there will be plenty of time once I am “cured” to go and meet people and that it will be easier as I will have that symmetrical balanced look that society tells us is a complete aphrodisiac. I know now that this was an incredibly unhelpful self belief and if I could turn back the clock I’d definitely do things differently, such as going and getting help for what I now know was so obviously a pretty significant anxiety disorder.

I’ve learnt that it’s far better to regret something that you have done than something that you didn’t do. Well, with there being a few exceptions to that rule of course.

I tell you all of this to stress the point that if you yourself or if you meet someone who seems happy to delay doing things that would lead to a higher quality of life if they did them right now until some indeterminate time in the future, then that is a real problem because that person has let the condition define them, at least at this moment of time. Life will pass you by if you don’t do things at the right time – let people know how you really feel about them, you only get so many trips around the sun, and you only live once.

It’s interesting, because the emotional journey is the journey that in New Zealand anyway, no-one supported me through in any official capacity. Through my role at Cleft NZ, I have supported many people through it, but I realised recently, no-one has ever really supported me through it. I always felt that I had to do something more than equal to be treated as an equal – it’s the same for any minority.

I have spoken to literally hundreds of people over the years at various stages of the journey. I have always endeavoured to provide people with reassurance but never bend the truth or make any promises. I was surprised in 2015 when a new parent to our organisation in New Zealand had watched a couple of my talks online and said to me “but you’re not like most people. You’re a strong, confident young man. My son might not find it as easy as you.”

It was at this moment, that I realised that I clearly had not shared enough of myself up until that point. We are all shaped by our experiences, and I am certainly no exception to that. This has not been at all easy, and talking about this and writing about this isn’t all that easy either. Feelings are a topic that are bandied around a lot nowadays, and people get very scared when people start talking about feelings. Well, like all of you, I am human and I experience the same range of emotions that you all go through. Yes, I have got up year after year and provided words of encouragement to people who are on this journey, words which I continue to stand by, but I am not going to stand up here and pretend that it’s all rosy. In fact, the last year of my journey with rhinoplasty and the recovery has brought the fact that I was born with a cleft to the forefront of my consciousness everyday with no way that I can ignore it if I tried.

I am not going to pretend that I
would not have preferred to not have to go through this experience and I am not going to pretend that from time to time I don’t grieve for the other life that I would have lived if things had been different. These feelings are not unusual, are not to be ashamed of, we all have had them – just as everyone who is human has.
Yet we don’t talk about this as it is seen as a sign of weakness. Yet to me, expressing feeling and emotion is a sign of strength.

Sure, if I had my time over again and was at the point in foetal development and I had a choice to make as to whether to develop a cleft or develop ‘normally’ – whatever ‘normal’ is besides a setting on a washing machine – I would pick the latter, as I’m sure most if not all of you would. However, I don’t get that choice, and I accept that. I never will have that other life that I grieve for from time to time. So I look at the life that I’ve got, and how to make the most of this one as it is the only one I’ve got, and there is a lot that is good about it. Had I not developed a cleft in utero, I most certainly wouldn’t be standing here proudly in front of you today as a result of the skills that I have developed along the way, I wouldn’t be a speech language therapist, or a radio presenter either – if I’d been that normal setting on the washing machine I doubt this would’ve happened for me. And it really does go to show that there is little you can’t do if you put your mind to it.

Smile, demonstrate love, compassion and be kind, for everyone you meet is fighting a great battle and remember that we are all far more similar than we ever will be different.


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