I am unique! Not in the sense that I have a cleft, as many others do too; but in the sense of my own experiences of living, and coping with a cleft lip.
The journey I have had, will differ from another’s journey; the emotional wrangling I felt, may not affect someone else in the same way. My experience of being a 60’s child born with a cleft (commonly referred to back then as a ‘hare lip’), will be somewhat different to what a child born today may experience. Modern surgical techniques, dentistry, support, the list goes on, now play an integral part to a successful cleft repair, and a healthy mind.
To be honest, I can’t recall ever being told about my cleft, and it was never spoken about! In fact, I have only one baby picture of me at about 6 – 9 months old, post-operatively, and none pre-operatively. At about age 6/7, I remember having an operation on my nose. Doctors blue inked a line down my nose before going to theatre, and I came back with a line of stitches on my nose where the surgeons had cut the skin for access. That scar caused me great anxiety for a long time, however now you can’t even tell.
My teenage years came and went. There were no more operations, they had been replaced by copious orthodontic appointments. Years of teeth removal, molds and braces followed, as did the realisation that I was different. As my self-awareness grew, my self-esteem, and self-confidence died. I found it difficult to start or initiate conversations, I didn’t like to join in or to be singled out, and friends were few and far between. It was a pretty miserable time.
I married and divorced, had another operation in my 20’s to ‘make things look better’, and carried on. I made myself speak to people: only the supermarket check-out people at first! Their positive reactions were in fact my stepping stones to a brighter me. I’ll be forever thankful to them.
I gave marriage another go, and found that as my children were growing, I didn’t think too much about future surgery. I didn’t like the way I looked, and poor self-esteem and self-consciousness were still trying to rear their heads. Following the breakdown of that marriage, I enrolled on an undergraduate course, and went to University. I was in my 40’s, and successfully gained a degree in Occupational Therapy. Realising that I was graduating into a professional field of work, I became acutely aware that many people would be seeking my advice face to face. That scared me! So, it was at this point I started thinking about further surgery, and looking for a support group, which led me to CLAPA. I’d always disliked how one of my nostrils was bigger than the other, and that my septum was deviated, which had always impacted on my breathing.
So in May 2013, my doctor made a referral to my local Cleft Team, and in July of that year I had my first consultation. The appointment went well, and things began to move. I even found out that I still had a hole in my gum, under my nose, and this needed to be fixed. It was pretty scary stuff, and also pretty exciting too! Following tests, x-rays, molds, photographs and 3D imaging, there was only psychology to go. Only once my psychologist agreed that I was mentally prepared for the surgery did it go ahead!
D-day was December 3rd, 2014, I was 46 years old (I’d waited a year and a half), and surgery consisted of: a septoplasty, rhinoplasty (using bone from my rib to create a bridge to my nose), an alveolar bone graft (using bone from my hip), and a lip revision to straighten and flatten my scar. It was a big operation, one I’m now pleased I had, but one I wouldn’t want to go through again. It took a long time to recover.
Looking back over my cleft journey has made me think that I have actually been much stronger than I had thought. I didn’t have that special someone to confide in, to tell how I was feeling, or to talk things through with. Perhaps, if I had, my experiences may have then been very different. I’m so glad to have found the CLAPA site, it’s been an important source of help, support and inspiration. However, I’ve hung up the surgical gloves now, and decided enough is enough. No more surgery for me! I can’t say that I’m totally content with how I look, but I’m happy, and more confident than I’ve ever been. That’s good enough for me.
3 responses to “Sandra’s Story”
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Hi Sandra, was this done on the NHS or was it private? im 37 and my cleft lip is looking worse now than it did a few years ago.
I am going to brave it and go to the doctors tomorrow to see if they can refer me as not only is it looking worse but one nostril is smaller and im finding it harder to breath through it than the other one.
Im so nervous about going to the doctors incase they think im being stupid but i know it will only get worse as i get older.
So glad i have seen your story as you have given me confidence to go and get this looked at.
Will keep you posted on what they say.
As far as we’re aware, this was done on the NHS. As an adult with a cleft, you are entitled to ongoing treatment on the NHS at any age from your local Cleft Team. Many adults return to treatment for a number of issues which include functionality and appearance. The easiest way to be seen is to get a referral from your GP. You can find out more here: https://www.clapa.com/treatment/adults/returning-to-treatment/
You may also want to have a chat to one of our Peer Contacts: https://www.clapa.com/peer-contacts/
Best of luck with everything, and do let us know if we can help you at all.
I’m so sorry, I have just come across your comment. Yes, it was done by the NHS. I’m so glad my story inspired you, and if you are reading this, please let me know how you got on.