It’s astonishing to learn what bodies can overcome and how they adapt to certain abnormalities. For example, Tessa Evans, born on Valentine’s Day in 2013, has heavily impacted the world of medicine. Moreover, she’s made a huge impact on her family’s lives while also gaining some public recognition along the way. Born without a nose, she was diagnosed with an incredibly rare genetic condition known as Bosma arhinia microphthalmia syndrome.
A Rare and Unusual Condition
Bosma arhinia microphthalmia syndrome most commonly affects how the nose and eyes develop and puberty later in life; some reports have also described “abnormal brain structure.” The first ever recorded case was in Vietnam in 1981. However, notes from the original study were dated as far back as the 1970s. Furthermore, references to the condition are made in French Literature from the early 1900’s. This means that although the condition is rare, there may have been more than the recorded cases. Either way, the condition is so rare that only 100 cases have ever been recorded. Tessa Evans is part of a small group of people who’ve overcome the unthinkable.
Tessa Evans is a Different Kind of Patient
One thing that sets Tessa Evans apart from others who’ve had her same condition is that she was the first human to undergo treatment at such an early age. Hence, her influence on the world of medicine. When Tessa Evans was born, her parents, just like any other, adored their sweet little girl. Grainne and Nathan Evans from Maghera, Northern Ireland, were shocked when Tessa Evans was born with the abnormality. After all, there were no signs throughout the pregnancy that anything was out of the ordinary. “Shock was the absolute biggest emotion at the time – then heartbreak.” Grianne shared.
Tessa Evans Overcomes the Odds
Moreover, because of the rarity of the condition, the pair had very little idea of what their future held. In contrast, and much to their surprise and pleasure, little Tessa Evans is seemingly thriving beyond the complications that life brought her way. Tessa Evans spent the first few weeks of her life in the ICU and at only two weeks old, had her first surgery. During this time, she was given a tracheostomy tube to give her a second airway, allowing her to sleep and eat more easily.
The condition that Tessa Evans has been facing brought to her parents an odd revelation. “It was funny the very first time she sneezed. We actually found out that it actually comes from your chest. However, having that wee bit of normality was quite nice.” Explained Nathan, her father. As it turns out, the sweet little girl has no sinuses or sense of smell but can still sneeze or catch a cold.
At two years old, she underwent her first nasal implant treatment. Thanks to the help of a 3D printer and a medical tattoo artist, she’s had a cosmetic nasal implant fitted, something she’ll have to have done every two years. However, during her teenage years, things will become more permanent. This groundbreaking surgery was unheard of for such a young person. Doctors have performed other cases “nasal prosthetics.” However, it’s typically done during the teen years as the face is more further developed by then.
“They say once they have the final, nuanced nose in place that they will then get a medical tattoo artist to tattoo in light and shade to make the more detailed contours of her nose. They can then dimple in the nostrils and shade them to look real,” her parents explained their decision for their daughter to undergo such an experimental treatment.
In part, the reason her parents made the decision for little Tessa Evans to undergo such an experimental surgery at such a young age is because they hoped to be able to minimize surgery for their sweet baby down the road. “It was an incredibly difficult decision for all of us, we love Tessa so much and thought she was completely beautiful the way she was.” Grianne disclosed. “We ultimately decided to go ahead as it was a chance to gradually change her appearance over the years and to normalize her profile without ever cutting her face.”
Danger Still Lies Ahead
Although she has been able to have some physical changes to help “normalize” her appearance, the condition still plagues her in an unusual way. Seeing how she has no sense of smell, Tessa Evans cannot smell. For example, if something were to catch on fire, she likely wouldn’t notice soon enough and her safety might be at risk. “She can’t smell if something is dangerous, if something was burning or if food is very rotten,” Grainne said. “Another child would automatically lift that up and know not to put it in their mouth whereas with Tessa doesn’t have that same early warning system.”
As previously mentioned, Tessa has changed the game for the world of medicine. As a result, another little girl in the UK has been able to undergo a similar procedure. Described by her mother as “charming” with “infallible courage,” Tessa Evans is proving that anything is possible. All anyone needs is the right treatment, support, and encouragement. Furthermore, Tessa has a Facebook page with nearly 10,000 followers called Tessa; Born Extraordinary. There, her family shares updates and all things happening in Tessa’s family.
- “Tessa Evans: Transformative surgery for County Derry baby born without a nose.” BBC June 11, 2015.
- “Bosma Arhinia Microphthalmia Syndrome.” Rare Diseases April 27, 2020
- “Bosma Arhinia Microphthalmia Syndrome (BAMS): First Report from Vietnam“. NIH. Febuary 15, 2023.
- “Girl, 2, born with no NOSE is the first undergo pioneering cosmetic surgery to have a new one built.” Daily Mail. Madlen Davies. June 3, 2015.
- “Born without a nose, here’s what Tessa Evans looks like at 10 — says she loves her new nose.” Newsner. Himani Ediriweera. November 6, 2023.