Photo: Chantal Braganza
A handful of times now, while on public transit with my infant son, I’ve had a conversation that begins the same way. Someone will look at his face and notice the little red seam that curves up from the centre of his lip into his left nostril, curling his mouth into a permanent pout. Whether through personal or anecdotal experience, they’ll identify this as a cleft lip, one of the most common birth defects, and say “What a cutie! When did he get the surgery?”
I’ve never really known how to answer this question, partly because I’ve never been totally comfortable with the assumed intimacy that many people think shared experiences afford them and partly because my son doesn’t have a cleft lip exactly and has never had surgery. When it comes to the future of this particular aspect of his life, I don’t know if he ever will. It has taken me a while to be OK with not knowing.
The first thing I saw when my son was born was his mouth and the way it gaped in a tiny, soundless howl of shock and surprise. I didn’t notice the red seam then nor when the midwife handed him to me, wet and screaming, nor when I learned to hold him while my husband cut the cord between us and took pictures. The physical work of birth does to time what it does to the body, expanding and contracting it in mind-bending ways, so I may be remembering the order all wrong. But this next part comes back very clearly: While a nurse weighed my son and took measurements, the attending midwife leaned into my ear and whispered, “Before I took over your prenatal care, did any of the ultrasound technicians or doctors warn you about your son having a cleft lip?”
My reaction wasn’t fear so much as uncertainty. Should I be afraid? For better or worse, that reaction ended up being a guiding principle for my early months as a first-time mom. Even with the benefit of parental wisdom and the readily available resource of the Internet (and sometimes because of them), it was hard to know the answer to that question and easy to believe that an answer was something I needed to have.
In this particular instance, I eventually learned that the clinical answer is no. Every year, one in 700 North American babies is born with a cleft lip or palate, which is a separation of the upper lip, the roof of the mouth or both. For a minuscule number of them, that largely cosmetic split is healed in utero in what is known as a “microform cleft.”
Through the Cleft Lip and Palate Program at SickKids in Toronto, we saw specialists to test his hearing and assess the structure of his nose. An otolaryngologist assured us that the soft tissue on the roof of his mouth had developed properly and we enrolled in a dental coverage program in case he should need it later on in life. One by one, the attending complications with a cleft lip were ruled out until we were given this last diagnosis: In every regard, our son was healthy. We could choose to have our son’s lip smoothed over with corrective surgery now if we wanted or wait until he could decide for himself.
If birth can bend time, early parenthood has the ability to shrink-wrap space, contracting your world to the exact contours of whatever issue that raising a child can bring up at the moment. My husband and I agonized over this single choice. He hated the idea of watching our six-month-old spend weeks sucking milk through a straw while his stitches healed, but he worried that feeling this way may have just been a selfish aversion to doing something that would be good for his child in the long run. I wondered what our son would ask us about the decision as a young adult. Would subjecting him to surgery suggest something specific about valuing looks in life? Would he resent us for an adolescence of discomfort if we didn’t? There was always the possibility that he’d grow up to easily love who he is and what he looks like. For us, this seemed like the best outcome of the three options, so it’s what we chose and, in doing so, chose to hope for.
I still believe that leaving this decision to my son is the right one, but I’m not so sure that my reliance on imagined outcomes is always the best logic. My husband and I might do our best job of raising a child who is comfortable and confident in who he is and what he looks like and he may still choose some kind of procedure. Such a scenario doesn’t necessarily mean a failure of parenting on our part or passing the buck—just the recognition that, as parents, we don’t have a monopoly on our child’s conclusions about what makes him who he is.
We made this decision during the first few weeks of his life and I’ve spent a lot of time looking at my son’s face ever since. It has changed quite a bit. The prenatal fluids that puffed his eyes and mouth into hard, straight lines eventually drained away. Waves of dry acne followed, and we spent weeks wiping away the crusty ochre that collected in the corners of his eyes. We never quite perfected the skill of cutting his nails before he gained control of his hands, so he sliced himself up often—deep, bloody gashes that I was convinced would heal into scars but never did. His hair curled up and big, boxy teeth grew in. Through all of this, his brown eyes, conspiratorial smile and lip have stayed the same, though the seam itself has lightened a bit. I’m convinced that they’re all part of who he is. I hope he feels the same way, and I’m equally prepared to think otherwise if he doesn’t believe the same one day.
Chantal Braganza is a digital editor at TVO.