Wednesday, 11 May 2016

Cleft Awareness Week


The post is a bit different to my usual efforts.  Instead of the usual attempts at humor and topicality I wanted to look at something closer to home.

Seven years ago my son was born with an undiagnosed unilateral cleft lip and palate (it wasn't detected on any of our pregnancy scans) and so for Cleft Awareness Week (May 7th to 14th) I wanted to try and tell the story from my perspective (of a parent) of the first seven years.

My objective in tackling this was to raise awareness rather than sympathy.  My son is not his cleft, it does not define him, but it is part of his story and its not a very common story with only 1 in 700 births leading to some form of cleft lip and palate.  Indeed if you met him today you wouldn't know think there was anything different about him until you looked closely then you would see the scar between his lip and nose from the first surgery.

However this is only our story and while parts of it may be familiar to other families their experiences will differ depending on the what type of cleft their children had, what the outcome of their surgeries were, and what, if any, problems they had to deal with.

Condensing all that has happened into a single page can be misleading.  It can make it look like we've done nothing but hospital visits and appointments, and whereas the first year was busy with two surgeries/ hospital stays, the years since have consisted of only a few appointments a couple of times a year.  It also ignores the major portion of his life both the fun and mundane with nursery, school, hobbies, holidays, friends, families which make him the wonderful kid he is.

Finally a few notes to clarify some points from the cartoon itself:
  • Andy Murray winning Wimbledon is obviously not a big a day as any of the weddings, births, 
  • Our son was our second child and when he was born we had no idea from any previous scans or appointments that he had a cleft.  His sister does not, nor is there any history of cleft in our family.  The science of what causes clefts is not fully understood although genetic and environmental factors can play a part.
  • We were fortunate that our son was born in the Queen Mothers hospital in Glasgow (no longer there) right next door to the Yorkhill Childrens Hospital (which is also moved now), because there was a Cleft team there who could be paged and a great nurse who could come and speak to us almost immediately.  Had we been born elsewhere we may have had to wait longer to get some quick assurance about what a cleft lip and palate meant.
  • I'm sure most people know what 'Wet Burp' is a euphemism for.
  • The hearing tests really did at one stage involve being in a dark room when some sort of scary monkey would make a noise with cymbals which even adults would find terrifying.
For more information about cleft lip and palate and the charity setup to support people with clefts and their families visit clapa.com.

2 comments:

  1. Great cartoon. My son was born with a cleft of the soft palete and I can remember the feeling when he was taken to the special care baby unit before we could see him. It seemed like forever before a member of the Cleft team was able to meet with us to explain things but they were excellent. The special feeding bottles, all the hospital visits and regular visits to the audiologist (the scary monkey with the cymbals). Holding my son as they administered the anaesthetic for his palete repair operation. He's 10 now and I wouldn't change a thing ❤️

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  2. My son is 13 and was treated by Mr ray at yorkhill he has done amazing work... lip repair cleft repair and 2 x pharyngoplasty my boy is doing great now his bone graft has been done and it's time for braces with Mr gilchrist leading the next stage

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