One of the things I learned from the amazing medical team I met in Guatemala in October is that approximately 10% of all babies born with a cleft lip and/or palate also have one or more other congenital anomalies. During my Journey of Smiles, I met a couple of cleft-affected children with Treacher Collins and Pierre Robin sequence, as well as a family where bilateral cleft was accompanied by Van der Woude syndrome.
In the past, it was assumed that cleft lip and palate was related to mental retardation but there’s no evidence to support this theory. However, if the cleft is part of a cluster of other problems that together form a syndrome, learning ability is sometimes affected.
In my case, a unilateral cleft lip and palate was accompanied by oesophageal atresia and a hole in the heart, though the latter remained undetected until I was in my early 30s.
While my cleft is visible to other people, the reality is that it has been less of an issue for me than the life-long consequences of a faulty oesophagus.
Shortly after my birth doctors discovered that I could swallow because my oesophagus wasn’t connected to the stomach but ended in a blind pouch. In addition, I had a tracheoesophageal fistula, an abnormal opening between the trachea and oesophagus.
I, therefore, needed immediate surgery to repair my oesophagus, leaving me with a rather elegant scar that runs from in-between my shoulder blades to my right breast.
The operation wasn’t without risk; my cleft meant that special care had to be taken with the general anaesthetics and, according to my mother, my survival wasn’t guaranteed. In the end, the operation was considered a success though scar tissue and the malfunctioning of the peristalsis (the muscular contractions and relaxations that propel food down the oesophagus) means I occasionally have difficulty swallowing food.
As long as I eat slowly and don’t swallow big chunks of food, I’m usually ok, and sometimes I can resolve an issue of stuck food without having to visit the bathroom. My mother can always tell from the look on my face – a blank, concentrated stare – when something’s stuck in my food pipe and I am trying to bring it down with sheer willpower, but most people have no idea there’s a problem.
Although it’s a problem invisible to others, it has been a source of much embarrassment and countless moments of panic in my life, when I’ve had to excuse myself in the middle of a dinner party to visit the bathroom to throw up food that is stuck.
“Sorry, I need to blow my nose,” I sometimes mumble before leaving the table, worried that people will think I lack manners for going to the toilet in the middle of a meal, or afraid they will suspect me of having an eating disorder.
Of course, I could just tell them the truth, but who wants to hear someone talking about throwing up food in the middle of their meal?
Whereas I’ve never felt alone in my experience with cleft, I wish I knew someone else with oesophageal atresia with whom I could share and compare experiences, but it’s a rare condition and I often find that even doctors know very little about how it affects people in adulthood.
If I’ve learned anything from having this condition, it is not to rush to draw conclusions about people based on what you see. Almost always there’s more to it than meets the eye.