Dave got in touch with CLAPA to share his story of growing up affected by cleft lip and palate.
My name is Dave Z. I was recently asked by the Cleft Lip & Palate association (CLAPA) to share my story about growing up and dealing with the issues surrounding cleft lip and palate. At first I was unsure whether to go for it, as its not something I usually talk about. If anything I try to avoid thinking about it.
I was lucky enough to be an 80’s child (the best decade may I add) and I am proud to have been born with a cleft lip and cleft palate. The condition left me with my nose requiring reconstruction and I also have a tiny hole in the roof of my mouth, which is linked to my nose.
Growing up I always had a good group of friends at school, so I never really had any negativity or bullying towards me in my close circle. However I had lots of grief from older kids and adults who used regularly insult and target me.
I’d love to say this was like water off a ducks back but, as with any type of bullying, it has left its mark. I still find it difficult to look in a mirror and photographs of myself are very few and far between. My early years with a cleft lip have certainly impacted my characteristics as an adult. I am an extremely fussy eater and I have major trouble socialising in public places (I’ve spent my entire adult life avoiding them). Having said this, I try my best to turn all these into positives. I believe its made me a kinder person and my cleft lip and palate have helped shape me into the person I am today. I am really happy and proud to be that person.
One thing in this world I cannot stand is bullying. It’s completely OK that not everyone is the same, and everyone has a right to be who they are or want to be.
I am proud to be a landscape photographer with 2 successful book releases. On top of this I have a regular day job as a performing arts technician/designer within a secondary school.
The only memories I have of the condition as a young boy are through old photographs. My parents informed me I had lots of operations and spent pretty much the first 3 years of my life in a hospital ward. I saw more of the nurses and doctors than I did some of my own family.
I can safely say that this period will have been a lot harder for my parents to cope with than any memory I have of the time. I was informed that I couldn’t use a regular baby bottle (though the hospital provided some razor blades to cut a larger hole in the bottle). I struggled with liquids and “normal” eating habits for a baby were simply not possible. I have been told I needed to wear mittens and splints on my arm to stop me spreading infection and aggravating any stitches from the operations. Absolutely everything had to be sterilised and I was limited to certain foods in order to reduce bacterial infections.
Despite this, I was a really happy baby. This was due to having amazing parents and great support within the hospitals. Being a parent myself it is the hardest thing in the world seeing my son poorly. I cannot image what it was like for my folks having to witness me have so many operations and spend a lot of time in hospital. Back in the 80’s the facilities and support were not at the level it was today, but they remained strong throughout it all and I was loved unconditionally. They gave my the best childhood I could have wished for.
When did I become aware?
I first realised I was slightly different to other kids at my first school. I noticed that I had to attend a lot more hospital appointments and the orthodontist (what seemed to be) every other week. It still sends shivers down my spine when I think about going into the room for an appointment. It reminds me a little bit like an X-factor audition because I would sit in a chair and have so many faces gathered around the room staring at me and discussing me.
Another memory (although not a fond one) was going to the speech therapist. You’re talking about the early 90’s too! There were no ipads. It was a paper and card job.
In Year 8, during middle school, came my first memory of an operation. I was required to have a bone graft to repair some of the bone in my jaw. This operation hit me hard for a number of reasons. It stopped me playing football for a lengthy spell (I was convinced I was the next Gazza) the other reason it hit me hard was a visit to the hospital to talk me through the procedure. I remember a lady showing me round the operating room and showing me the gas mask they use to put me under. That memory still haunts me to this day and I have real anxieties about hospitals and falling ill. On the surface I appear jovial and confident, but I fight a daily battle with anxiety. In order to help deal with this I have always invested my energy into something creative, whether that be football, music, or photography.
The operation required a bone graft from my hip in order to strengthen my jaw. It was tough on me, as I had to spend 3 weeks in hospital and needed 127 stitches in my mouth (aghhhhhh). I wasn’t allowed anything with sugar in or anything dairy, so the diet was pretty grim. It hurt to laugh, hurt to cry, and I couldn’t even walk due to the state of my hip.
The time in hospital was not a pleasant experience. For the first 2 weeks, I had to be on a completely liquidised diet. If you think hospital food is bad now, then I suggest you sample the diet I was on. The current menu would be like going to a Gordon Ramsey restaurant in comparison. I remember one instance where I’d gone into the play area and I was playing a game with another boy who was making me laugh. The nurse came up to me and said I had to go back to my room because laughing could aggravate the stitches.
Once this operation was complete the surgeons began prepping me for the next one I needed. This was to reconstruct and rebuild my nose, which was pulled flat as a result of the cleft lip and palate at birth.
In the midst of this, I had countless treatments at the orthodontist to straighten my teeth and jaw. I was given 2 temporary braces and one permanent (which is still here as I type).
Have you had any treatment as an adult?
In my early 20’s I finally plucked up the courage to have the operation to reconstruct my nose. This was due to a numer of reasons:
1) I lost 2 close friends in a car crash and this really helped me to realise that life is too short. I had to grow up in a very short space of time.
2) I was in a band and started really becoming aware of my appearance. My nose was missing any kind of centre point and gristle, so the operation would completely build this back up.
On my pre-op appointment, I remember the surgeon saying:
“We can certainly reconstruct your nose, but unfortunately you’re not going to have a nose like Johnny Depp, it will be much bigger, like your dads.”
If anything was going to put me off it was that, but I decided to be brave and go for it. #
I’ve got to say I do not have fond memories of the operation. I was under the knife for 5 hours and felt dreadful for a long time afterwards. I had to wear a mask for a month and, to add insult to injury, I remember the nurse elbowing me in my nose when I went to have my stitches and mask removed!
Looking back I would have had the surgery done sooner. My life has been much improved since and it was definitely the right thing to do. My fears about the operation were a lot worse in my head than the actual event. I had sleepless nights for weeks prior.
To be honest I never really get asked about it at all. I only bring it up when people have asked if I have had any operations, and then I’ll point it out. I’m pretty much always faced with the same answer; “oh I wouldn’t have noticed if you wouldn’t have said anything”.
When did you join the CLAPA Community and why? How has it affected you? Do you think it is important to have a community for people with and affected by cleft?
I think, reading other peoples stories and talking to people in the same situation as you is invaluable. I think one thing people don’t do enough of in this day in age is talk about how they are feeling or discuss the things that are bothering them. One thing I have learned as I have gotten older is what you see from people is only about 10%. It’s the tip of the ice berg. There is normally a whole world going on underneath that we know nothing about. So my advice would be to encourage people to talk, ask how they are, be supportive and kind!
What would you say to young people with a cleft who may be struggling in some way? What is the one piece of advice you would give?
I’d tell them not to worry and that everything will be fine. It’s part of who they are as a person, so embrace it and use it to help shape yourself into anything you want to be. It will not hinder any path you choose to take in life. Be confident in the person you are and follow your dreams! I can assure you any doubts about your cleft lip and palate are not echoed in other peoples minds. It has never affected any relationships in my life, whether that be girlfriends or friends. They have always been supportive.
If you’d like to share your story you can share it here through our website.
NOTE: Thanks so much to Dave for sharing his wonderful story with CLAPA. Dave’s original blog post can be found here, and we have republished Dave’s account here on our website with his full permission.