There are only 11 documented cases of congenital aglossia in the world, so I’m in a pretty exclusive club. Despite being born without a tongue, I can speak and swallow and taste just like anyone else. I have the base of the tongue and the muscle on the floor of my mouth, which I can move up and down, but other than that, there’s nothing there at all.
Not all people with this condition are lucky enough to be able to talk. The base of the tongue doesn’t reach the roof of my mouth, but I use the inside of my cheeks, my lips, my teeth and the floor of my mouth. Nobody ever sat me down and told me how to make the sound B or D; I thought everyone talked the way I do. A lot of it has to do with not missing what you never had.
I was born in 1969, in the days before ultrasound scans. It was a normal pregnancy, and there was nothing to suggest that I’d be different. But when I was born, Mum could tell, by looking in my mouth, there was something wrong. The doctor saw the base of my tongue and told her, “Oh, she just has a small tongue. She’ll be fine.” I was lucky, because I didn’t have any issues with my airway and was able to swallow. It was difficult at first, but they used an adapted bottle to feed me.
Later, doctors told my parents I wouldn’t be able to talk or that my speech would be very limited. I’m sure that was hard for them to hear. But they were only 22 and I’m not sure how seriously they took it. I was their first and only child, and the best thing they ever did was treat me as if there was nothing wrong. Mum told me when I was older that she came home from a doctor’s appointment and cried, because she worried I wouldn’t have a normal life or be happy. But when I was growing up, I knew I had parents and a family who loved me to death.
I did become self-conscious about it. It was the little things. My cousins would stick out their tongues and I would think, “Why can’t I do that?” And I couldn’t blow bubbles with gum. Adults would ask my name and I’d have to repeat it a few times, and I’d wonder why they couldn’t understand me. My name is Kelly, and the hard C sound is one of the most difficult for me to make.
I also have a small jaw. It’s related, because there is no tongue to fill out the space. People are able to see that, rather than the fact that I don’t have a tongue.
When I started pre-school, I was teased. One girl used to come up to me every day and tell me I had a crooked mouth. I was like, “What does that mean?” I remember thinking, “Don’t you know I’m awesome?” Then, one day, I just replied, “I know! Do you want to play?” We became friends and it never came up again.
I went to see a plastic surgeon when I was 10, who suggested making a false tongue. I just thought, “Why would you do that?” I was more interested in having my chin and jaw filled out. But when I was 18 the surgeon said he wasn’t comfortable doing anything surgical in case it hindered my speech. I thought, “I don’t care, I just want to be pretty,” but it was the right decision.
My tastebuds are perfectly normal. I’m told they’re on the base of my tongue and the inside of my cheeks. I’m able to taste the full range of flavours. I’d wondered if I was doing it by smell or texture. I can eat everything, even ice-cream cones; I just use my lips. The only thing that’s difficult is biting into an apple, but that’s due to my jaw alignment.
What’s kissing like without a tongue? Well, I like to kiss and I’ve been told I’m a good kisser; I’m sure it’s different, but I’ve had no complaints.
I’ve never had any anger about being born this way. I occasionally wondered how I would have looked or sounded if I’d been born with a tongue. Over the years, I’ve learned to embrace it, which hasn’t always been easy. I’d love to think I offer hope to others in this situation, to parents or children born like me.
• As told to Sophie Haydock
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