Bilateral vocal-fold agenesis

The larynx sits between your throat and your windpipe. It's made of cartilage, muscle, nerves and soft tissue. In most people, two true vocal folds run across it. When you're just breathing quietly, they sit apart so air can pass through. When you talk, they snap together and air from your lungs makes their edges vibrate really fast. That vibration is the raw sound, which your throat, mouth, tongue, lips and nose then shape into actual speech.

Agenesis isn't the same thing as vocal-fold paralysis. With paralysis, the folds exist but don't move properly because a nerve or muscle isn't working. It's also different from scarring, nodules or an injury, where the tissue's there but can't vibrate the way it should. With bilateral agenesis, there's no pair of true folds to vibrate. There's nothing missing that could switch back on.

That's why me trying harder, whispering, pushing air out or practising a sound isn't going to make a voice appear. Even a whisper needs those laryngeal structures to shape the air. Humming needs a working voice box. Shouting isn't just a really loud breath. None of that becomes possible through effort, or confidence, or someone leaning on me to give it a go.

During a normal swallow, your airway gets protected in layers. The larynx lifts up and forward. The epiglottis tilts to help steer food around the entrance. Tissue at the top of the larynx narrows. Then the false and true vocal folds close. Breathing pauses for a split second while whatever you're eating heads down towards your food pipe instead. No single part does all the work, but the true vocal folds are an important last line of defence.

Coughing uses that same closing trick. You breathe in, seal the gap, squeeze your breathing muscles to build up pressure, then pop the seal open fast. That sudden burst of air is what shoves mucus or whatever's stuck back out. Without true vocal folds, I can't build that seal or that pressure. My cough comes out weak and breathy instead of forceful.

Aspiration is the medical word for stuff going down towards your lungs instead of staying on the food route. It doesn't have to look like the big dramatic choking scene from a film. Sometimes it's obvious, but sometimes it's completely silent. Aspiration that keeps happening can irritate your lungs and lead to chest infections, which is exactly why swallowing safety matters even when someone looks totally calm.

Missing vocal folds meant I had a high risk of aspiration when I was little. It also meant that if I choked or got scared, I couldn't shout for help and couldn't rely on a strong cough to sort the problem out myself. Those risks shaped a lot of medical decisions and daily habits long before anyone was writing pages about my silence.

People noticed I had no voice right from birth. From what I've been told, bilateral vocal-fold agenesis was formally diagnosed when I was three. Looking inside the airway with a scope is basically essential for diagnosing anomalies like this, because it lets doctors actually see the structures instead of guessing. Silence on its own could mean agenesis, paralysis, a neurological problem, a blockage, or something else entirely.

There isn't much published medical writing about vocal-fold agenesis at all. A case report from 1971 describes it in someone with tuberous sclerosis, and one from 2008 describes agenesis on just one side. Those papers show how unusual this anatomy is, but a small pile of old case reports can't prove I'm literally the only person alive with it. There are probably unpublished cases, different names for the same thing, and gaps in how everything gets recorded.

So I'm not going to claim I'm definitely the only known case without tuberous sclerosis, because nobody can actually prove that. What I can say honestly is this: bilateral vocal-fold agenesis is extraordinarily rare, there's barely any accessible research on it, and doctors can't lean on a big pile of evidence built from people with exactly my anatomy.

Being rare can be medically complicated and socially awkward at the same time. It means repeating the same explanation constantly, meeting professionals who've never seen this before, and not really knowing what the long-term options even are. It doesn't make me public research material, though. Curiosity doesn't override consent, and a rare body is still just a regular person's body.

A partial epiglottopexy fixes part of the epiglottis in one chosen position. It comes up most often in papers about epiglottic collapse and breathing problems during sleep, and results depend a lot on the patient and whatever other procedures happen alongside it. In a reconstruction like mine, aimed at stopping aspiration, securing part of the epiglottis can help reshape the entrance and steer swallowed food away from the airway while still leaving enough movement for breathing.

Aryepiglottic-fold plication works on the tissue that forms the side walls of the top of the larynx. Plication just means folding or stitching tissue together to draw it in. Broadly, the goal is to narrow that upper entrance so food and drink can't spill into it as easily. Similar operations in the research create a taller, more tube-shaped wall at the top of the voice box and have helped swallowing in some patients with serious aspiration. Mine should be thought of as its own version of this, not assumed to be identical to every published technique out there.

Laryngeal suspension moves and secures the larynx a bit higher and further forward. That's basically copying part of what your larynx already does during a normal swallow. Lifting it helps the airway tuck underneath the base of the tongue and can improve the angle that opens the top of the food pipe. It's often done together with a cricopharyngeal myotomy, especially when someone has both poor lift and serious aspiration.

The cricopharyngeus is a big muscle at the top of the food pipe, in the high-pressure zone between the lower throat and the oesophagus. During a normal swallow it relaxes and opens as the larynx lifts. A cricopharyngeal myotomy cuts some of those muscle fibres so that opening gives less resistance. On its own it doesn't protect the airway at all. Its job is to make the actual food route easier to get through, so there's less hold-up and the other reconstructed bits can do their job properly.

Put together, the logic makes more sense. The upper entrance to my larynx is reshaped. My epiglottis is partly held in place. My larynx sits somewhere more useful. And the opening into my food pipe works more easily. Instead of replacing the missing true vocal folds, the operations strengthen and coordinate everything else that's protecting my airway.

Swallowing surgery always comes with trade-offs and individual risk. Studies on epiglottopexy, myotomy and laryngeal suspension cover all sorts of different diagnoses, ages and combinations of procedures, so results from one group of patients don't just transfer onto me automatically. What I can tell you from my own life is that these operations made aspiration and everyday eating a lot less scary than they used to be.

A cough-assist machine, also called mechanical insufflation-exsufflation, pushes air into your lungs and then pulls it rapidly back out. It's usually used by people who can't cough effectively on their own. Using it doesn't mean I'm constantly seriously ill, it's just mechanical help for a physical job my larynx genuinely can't do properly.

I still use airway-clearance support a few times a day. It matters even more when I've got a lot of mucus building up, or when a normal infection makes clearing it harder than usual. People around me shouldn't be waiting for a loud cough as the sign that something's wrong, because my anatomy makes loudness a rubbish way to judge how serious things are.

This is exactly the kind of thing that belongs in practical planning rather than public guessing. A parent or responsible adult should be involved in medical decisions and in any professional setting where illness, food, hard exertion or travel creates real risk. Nobody needs to improvise treatment for me. They just need to understand that a weak cough is real, the equipment is necessary, and any worries should go to the people who actually know my care plan.

My most recognisable tool is a speech-generating tablet. I type a message and it speaks it out loud for me. The voice itself is built from recordings donated by a real boy, who later actually became my friend. That story means a lot to me, but it doesn't mean he writes, picks or approves anything I say. Every word, every joke, every opinion coming out of it is mine.

With family, signs and familiar gestures are often quicker and more natural than typing. I know some Polish Sign Language, though I wouldn't call myself fluent in it. I also write by hand, type on my phone or laptop, use my face a lot, and point to clear options. It's a mix of everything, because no single tool works everywhere I go.

AAC has a built-in speed problem. A spoken conversation can just carry on moving while I'm still typing my first answer. If someone asks another question, guesses what I'd say, or starts talking to the adult standing next to me instead, the device hasn't failed. The group has just failed to leave a gap where it could actually work.

Technology has real limits too: batteries run out, screens break, speakers are hard to hear in a loud room, and my hands can shake or freeze up if I'm panicking. Good access means having backups ready. Paper, a phone, yes-or-no questions, agreed gestures and a trusted communication partner can all help, without anyone taking control away from me.

At school, written answers, extra time, alternatives to standing up and talking, and patient group work aren't special treats for me. They're just ways to test what I actually know instead of testing whether I can make sound. A fast spoken quiz measures the wrong thing entirely. So does a group task where every decision's already been made before my AAC sentence is even finished.

Fire drills and emergencies raise a different problem. I can't shout my location or call out to someone from a distance. An emergency plan should include visual ways for me to signal, an adult responsible for checking where I am, and backup communication methods. It should never assume a child in danger will make noise, because I won't.

On a modelling set, clear written call sheets, showing me things instead of just saying them, and one named adult I can go to make direction really straightforward. I understand ordinary professional language completely fine. The adjustment is in how information and answers travel back and forth, not in lowering what's expected of me creatively or behaviourally. My dad, agent or manager handles bookings and safety, but staff should still talk to me directly about the day-to-day stuff.

Public interactions get uncomfortable when strangers treat AAC like a performance. They ask me to make the device say something funny, do a robot voice, reveal private medical details, or prove I really can't talk. None of that is neutral curiosity. My communication device is personal access, not entertainment for whoever's nearby.

I lead with the anatomy because basically every label gets misread eventually. Mute has been used as an insult for years and still gets heard as stupid. Non-speaking sits one letter away from nonverbal in most people's heads, and nonverbal is flat-out wrong for someone who writes poetry in several languages. Voiceless and born without vocal folds say what's actually missing: the tissue, not the language.

Having no voice doesn't mean I'm deaf. It doesn't tell you anything about my intelligence, my reading, my emotions, my sense of humour, my consent, or my maturity. I can follow complicated language in several languages. I write poetry and essays, work as a model, babysit, study, argue, joke around, and change my mind constantly. None of that makes me some kind of exception. It just shows how little this condition actually says about how someone thinks.

Silence isn't automatically agreement either. If I freeze, lose access to typing, or can't reach my device, nobody should treat the lack of a spoken no as a yes. That matters most in medical settings, photography, being touched, travelling, and anywhere adults have power over me.

The opposite stereotype is the 'inspiring' one. Ordinary competence shouldn't get turned into some story about overcoming silence for other people's emotional benefit. I've worked hard and solved real access problems, sure. I also deserve to complain, need help, be bored, and have my actual achievements discussed for what they actually are.

A child who can't make a voice might keep meeting adults who assume silence means refusal, or inability, or that there's nothing much going on upstairs. Seeing one older child using AAC, signs, writing and trusted support can make it feel like a real life, not just a consolation prize.

Parents and professionals can take something useful from this too. Communication needs to start early, stay available all the time, and belong to the child, not to whoever's in charge that day. Waiting around for speech that the anatomy simply can't produce wastes everyone's time. So does making access conditional on being calm, having perfect motor control, or being grateful enough.

The medical lesson isn't that my four operations are a template for anyone else. My anatomy is rare and surgical choices are always individual. The real point is that swallowing, airway protection, coughing and communication all need to be checked separately. Fixing one doesn't automatically fix the rest.

The personal lesson is simpler than all that. Someone can have zero voice and still be completely full of language. A borrowed, synthetic sound can still carry your own original thoughts. Needing machines, surgery or patience doesn't make a child scary, or broken, or too much effort to bother knowing.