She has no sense of smell. She has no sinuses. And yet, Tessa Evans’ smile is probably one of the most famous on the internet.
When we talk about a person with no nose, the conversation usually drifts toward sci-fi or dark fantasy characters. We think of Voldemort. We think of CGI. But for a very small number of people, this is a medical reality known as congenital arhinia. It’s so rare that it only affects about one in 100 million births.
Think about those odds for a second.
Tessa was born in Ireland in 2013. When she arrived, her parents, Grainne and Nathan Evans, weren't prepared for what they saw. Usually, a baby's face is the first thing you memorize, but Tessa’s was missing a central feature. Doctors were baffled. This wasn’t a deformity caused by an accident or a botched surgery. It was a complete absence of the nasal structure from birth. Honestly, it’s the kind of thing that makes even veteran doctors do a double-take because there are fewer than 100 recorded cases in medical history.
What is Congenital Arhinia?
Basically, it's a condition where the nose fails to develop in the womb. But it isn't just about the external "bump" on the face. It’s internal.
People with this condition lack the olfactory bulb, which is the part of the brain that processes smells. If you can’t smell, you can’t really taste food the way everyone else does. Most of our "flavor" experience comes from the nose, not the tongue. So, for a person with no nose, eating is more about texture and basic sensations like salt, sweet, or bitter.
It’s also a massive respiratory challenge.
Babies are "obligate nasal breathers." They naturally breathe through their noses so they can swallow milk at the same time. Tessa had to spend her first few weeks in intensive care. She eventually had a tracheostomy to help her breathe, which is a small tube in her neck. It’s a lot for a kid to handle.
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The science of the "Missing" Feature
The genetic cause of arhinia remained a mystery for a long time. However, researchers eventually identified mutations in a gene called SMCHD1. This gene is usually associated with a type of muscular dystrophy, but in a strange biological twist, it also controls how the mid-face forms during early embryonic development.
- It’s not hereditary in the traditional sense.
- Most cases are "de novo," meaning they happen spontaneously.
- The eyes and palate are often affected too.
For Tessa, her eyes were also impacted. She underwent surgery early on to treat cataracts and has dealt with some sight issues. But the focus of the world has always been on her nose—or the lack thereof.
The Breakthrough 3D-Printing Surgery
Medical technology has moved fast since Tessa was born. For a long time, the only way to "fix" arhinia was to wait until a child was a teenager. Surgeons would take bone and skin grafts from other parts of the body. It was invasive. It left massive scars. And the results? Often, they didn't look very natural because the skin didn't match the face perfectly.
But Tessa became a pioneer.
She was the first person with no nose to undergo a revolutionary 3D-printing procedure. Instead of cutting her face open, doctors used a 3-D printer to create a custom-made implant. This "mold" was inserted under her skin through an incision in her hairline.
The goal? Stretch the skin gradually.
It's sorta like how expanders work in other types of plastic surgery. Every few years, they replace the implant with a slightly larger one. By the time she reaches her teens, her skin will have stretched enough to accommodate a more permanent, realistic-looking nose. It’s a long-game strategy. It avoids the heavy scarring of traditional reconstructive surgery.
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Living Without a Sense of Smell
You’ve probably never thought about how much you rely on your nose for safety.
If your house is on fire, you smell smoke. If the milk is spoiled, you smell the sourness. If there’s a gas leak, you smell the sulfur. For a person with no nose, the world is a significantly more dangerous place. They have to rely on technology—smoke detectors and gas sensors—for things we take for granted.
There's also the social aspect.
Smell is tied to memory. The scent of rain, a specific perfume, or a "new car smell" triggers emotions. Tessa and others like her live in a world devoid of those triggers. It’s a different way of experiencing humanity. Not worse, just different. Tessa’s mother has often shared that Tessa is one of the most vibrant, happy kids you’ll ever meet. She doesn’t see herself as "broken." She just sees herself as Tessa.
Other Notable Cases and Misconceptions
Tessa isn’t the only one, though she is the most public face of the condition. In 2015, a baby named Eli Thompson was born in Alabama with the same condition. His story went viral, but sadly, Eli passed away at the age of two. His death wasn't directly caused by the lack of a nose, but children with arhinia often face a cocktail of other health complications, including heart issues and breathing difficulties.
People often confuse arhinia with other conditions.
- Syphilis: In the past, advanced syphilis could cause the bridge of the nose to collapse, leading to a "saddle nose" or complete loss of the external nose. This is why 19th-century medical journals are full of photos of people with no noses.
- Cancer: Some people lose their noses to basal cell carcinoma or other aggressive skin cancers.
- Accidents: Traumatic injuries can obviously lead to the loss of facial features.
But congenital arhinia is unique because the "plumbing" was never there to begin with. There are no nasal passages. There is just solid bone where the cavities should be.
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The Cost of Visibility
Grainne Evans decided to share Tessa’s journey on social media to raise awareness. It was a brave move. The internet can be a dark place.
While most people have been incredibly supportive, the family has had to deal with the usual "why don't you just fix it?" comments. People don't realize that "fixing" a face isn't like fixing a dent in a car. It involves dozens of surgeries, risks of infection, and years of recovery.
By being visible, Tessa has changed the narrative. She’s not a medical curiosity or a "freak." She’s a kid who likes to dance, play, and live her life. She proves that a "normal" face isn't a requirement for a happy life.
Moving Forward: What You Should Know
If you ever encounter a person with no nose or someone with a visible facial difference, the best approach is just... being normal. Kids are usually curious and will ask "where is your nose?" but adults tend to stare or look away awkwardly.
Honestly, staring is worse.
Practical Realities of Arhinia
- Breathing: Many require a tracheostomy or specialized breathing treatments, especially during sleep.
- Feeding: Early life is often dominated by feeding tubes because the suck-swallow-breathe reflex is broken.
- Surgeries: It is a lifelong commitment. The "new" nose has to grow as the child grows.
- Speech: The nose acts as a resonator for our voice. Without it, speech can sound "muffled" or different, requiring speech therapy.
The medical community is currently looking at how to use stem cells to grow cartilage that could eventually be used for more permanent reconstructions. We aren't there yet, but the progress made since 2013 is staggering.
Tessa Evans continues to break boundaries. Her journey from a tiny baby in an incubator to a confident young girl is a testament to modern medicine and, more importantly, a family's refusal to let a "missing" feature define a life.
The most important takeaway is that being "different" doesn't mean being "less." Tessa's story isn't a tragedy. It’s a study in resilience. It's about how we define beauty in a world that is obsessed with symmetry. When you see her smile, you realize that the nose is just a small part of the story.
Actionable Insights for Awareness
- Support Craniofacial Charities: Organizations like FaceIT or Changing Faces provide resources for families dealing with rare facial conditions.
- Educate Early: If you have children, talk to them about facial differences. Explain that some people are born without certain parts, but they are still people who want to be treated with kindness.
- Check Your Bias: Recognize that our brains are wired to find "missing" facial features jarring. It’s a biological response, but we can overcome it with empathy and exposure.
- Follow Real Stories: Don’t rely on sensationalized tabloid headlines. Follow advocates like Grainne Evans who provide the real, day-to-day context of living with arhinia.
- Monitor Medical Tech: If you're interested in the future of surgery, keep an eye on 3D bioprinting. It’s the next frontier for reconstructive medicine.