Children with cleft palate often face years of orthodontic treatment to correct their bite, move and straighten teeth and in some cases compensate for the lack of teeth in the cleft area.
I was no exception. As much as I hated the sharp metal train tracks on my teeth and the fiddly rubber bands that stuck to them, not to mention the massive contraption I had to wear at night, I carried on in the hope of transforming my crooked teeth into a perfect Hollywood smile.
When I was sixteen years old and in the first semester at a new school where, for the first time in my life, I was thriving, my orthodontist broke the news to me that despite all his efforts, I needed surgery on my upper jaw to correct my bite.
The operation would be carried out by a team of maxillofacial surgeons and for seven weeks after my jaws would be wired shut, restricting me to a liquid diet.
So that I wouldn’t miss too much school, the operation was scheduled to take place just before the Christmas holiday. There would be no Christmas food for me, though, only soup, soup and more soup.
At the time, my orthodontist, who I’d been going to since I was seven, was keen on exploring whether hypnotherapy could help reduce blood loss during this kind of jaw operation and he convinced me to give it a try.
Less blood loss, less swelling was the argument that swayed me, for the sooner I got back to my normal self after surgery, the better. When you’re 16, the last thing you need is a painful and humiliating operation that renders your face hideously swollen.
A week before the surgery, I finally got to meet H and L, the burly, red-faced, clog-clad maxillofacial surgeons who would cut my upper jaw apart and realign it with my lower jaw. Examining me, one of them muttered to the other,
“The palate is too narrow, so we’ll need to widen it.”
“How do you do that?” I interrupted anxiously.
“Oh, we’ll take some bone from your rib cage,” he casually replied as if he were discussing a trivial matter. “We’ll make the incisions under your breast, so the scar is less visible.”
I froze. There was nothing trivial about cutting into my ribcage. At least the jaw op wouldn’t leave any visible scars, but messing with the area around my breast was something else. Why had no one told me this earlier?
“But Jenny, no one will notice the scar once it’s healed,” my mother tried to reassure me, but I wasn’t easily placated. For some reason, the news of the impending bone graft bothered me more than the fact my jaws would be wired shut for weeks on end.
I was admitted to hospital the night before the operation, and my father who was visiting from London came to see me. Neither of us was prone to expressing our feelings, so we spent an hour chatting about non-essentials, and I played it very cool. But deep inside I was terrified of the impending operation.
I didn’t sleep much that night, and in the morning, shortly before I was due in the operating theatre, the nurse gave me a sedative that made me feel disoriented but no less frightened of what was to come.
In the ice-cold theatre, the anaesthetist came up to me and without introducing himself said, “Jenny, when we wake you after the operation, you’ll need to breathe on your own, otherwise…”
That’s all I heard before I fell into a deep drug-induced sleep.
I later found out that I had bled so much during the operation that I’d had to have a blood transfusion. The hypnotherapy hadn’t worked, and I believe that’s because I fell asleep thinking I would die if I didn’t do as the anaesthetist said.
I spent a whole night in the recovery suite, having blood sucked out of my throat, choking and crying from the pain. It was like an excruciating nightmare, except it was real. I thought I could hear another patient moaning loudly next to me, but it was my own screams I was hearing.
Many hours later, I was back on the ward where I shared a room with three women (being 16 I was placed in the adult ward). I desperately needed to go to the toilet and the nurse told me I could go on my own. I made it halfway back to my bed before I fainted on the floor.
It took days before I gathered the courage to look at my face in the mirror. It was swollen beyond recognition, and I wondered if I’d ever look normal again.
After a week in the hospital, I was discharged. The pain and stubborn swelling took its toll on me, making me irritable, reluctant to leave the house or receive visitors. I spent most of the Christmas holiday feeling depressed, unable to get a restful sleep and anxious that the wiring was failing and my whole jaw would fall out.
Ever since that Christmas when I was 16, I’ve approached the holiday season with trepidation and a feeling of being forced to be jolly when what I really want to do is curl up in bed and not get out until the New Year.
Hi Jenny- This was so touching and moving. Having a son with a cleft, I appreciate you sharing your journey. I find the more I learn from others experience around cleft, the more equipped I feel to help him. Thank you for writing your blog. I can’t imagine what you have endured, however my wish for you is that this holiday season you find comfort and joy.
Thanks Jeni! Your support is always much appreciated. Happy holidays!