For most parents, a new pregnancy is cause for celebration—a new addition to a family is a promise of new experiences, memories and love. Unfortunately, sometimes there are complications and parents are given the option to proceed with their pregnancy or terminate it.
That was the choice one Irish couple faced when doctors said their unborn daughter had an unbelievably rare disorder. However, in the end, they could not bear to abort the child—from the very beginning, they were going to fight.
But not only did their decision keep their family whole, it also ended up giving hope to other families around the world.
Grainne and Nathan’s unborn child suffered from a rare medical condition that affected only 47 children in medical history.
In 2013, Maghera, Ireland, residents Grainne and Nathan Evan’s were overjoyed by the news that there would be a new addition to their family. Grainne, a mother of three, was pregnant with a baby girl.
But that news soon turned into concern when doctors saw an anomaly during the couple’s 20-week scan. What they found was that their unborn daughter, Tessa, suffered from an extremely rare medical disorder.
The disorder, called complete congenital arhinia, meant that unborn Tessa would be born without a nose or nasal passage. It was such a rare disorder that only 47 cases have been reported in medical history, and Tessa was only one of two children in the United Kingdom afflicted by it.
“When the scan first showed abnormalities I just couldn’t understand it, I didn’t even know it was possible,” Grainne told the Daily Mail. “How did my little girl not have a nose? Was she going to live? Would anyone be able to help her?”
Grainne was given a difficult choice—terminate the pregnancy or continue to full term.
Due to the various health issues little Tessa would face were she to be born, doctors presented the couple with a difficult choice.
“Initial research advised to terminate my pregnancy,” Grainne told the Daily Mail.
But the couple could not bring themselves to do it—they were not about to give up on their little girl.
It was a good thing they didn’t too, because follow-up scans suggested that Tessa was still strong and healthy. Still, her condition made the circumstances of her birth more than a little challenging.
“I kissed her forehead and told her I loved her before they took her away,” Grainne told the Daily Mail. “I felt so lonely and helpless, I was supposed to protect my baby and be able to help but I couldn’t. There were tubes coming out of her tiny little body everywhere.”
Despite initial health issues, resilient little Tessa bounced back and was just like any other little girl.
Tessa’s first several months out of the womb were not easy.
“Doctors were able to stabilize her so she could breathe on her own, and eventually I was allowed to hold her for a few seconds,” Grainne told the Daily Mail. “She spent her first five weeks in a neonatal intensive care unit which were undoubtedly the worst weeks of my life.”
Along with her lack of nasal development, the little girl was born with a hole in her heart and eye problems. At just 11 weeks, she needed surgery to remove a cataract from her left eye—but due to complications, the surgery left that eye completely blind. On top of that, Tessa also required a tracheotomy, which allowed her to breathe while she ate and slept.
Despite these hurdles, though, Tessa bounced back from every one of them. As time went on, she proved herself to be an excitable, bubbly and happy little girl just like any other.
“She loves playing with her brother and sister, she’s always smiling and has never let her condition stop her from doing anything,” Grainne told the Daily Mail.
However, there was still one issue that her parents, as well as modern medical technology, hoped to rectify.
For her parents, Tessa was perfect just the way she was—but they yearned for the world to see her the way they did.
So, they embarked on a mission: Not only did they raise awareness about their daughter’s rare condition, but they also made the difficult decision to expose Tessa to experimental surgery aimed at giving the little girl a nose from a very young age.
“Everyone who meets her instantly falls in love with her. We just want her to inspire other people like she inspires us,” Grainne told the Daily Mail.
Utilizing the cosmetic surgical expertise at Great Ormond Street Hospital, in London, Tessa would undergo an experimental surgery to insert a prosthetic nose, created using the latest 3D printing technology. This prosthetic would then be updated as time went on to fit their daughters face until her teenage years, when a final, full-featured nose would be surgically implanted and augmented by tattoos.
Tessa is leading the way—because of her, other children born with arhinia might have a pathway to a normal life.
The process had never been done before, but the benefits were immediately obvious and attractive. Not only would early surgery save the girls face from scarring, it would make it easier to implant later prosthetics.
“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,” Grainne told the Daily Mail. “We ultimately decided to go ahead as it was a chance to gradually change her appearance over the years and to normalise her profile without ever cutting her face.”
In 2015, Tessa, then 2 years old, underwent the first phase of the surgery, which placed a prosthesis where her nose should have been. It was not a full nose, just a small prosthetic aimed to normalize her facial profile. Even though it was a small addition, though, the effects were immediate and noticeable.
“We have been totally thrilled with the result, she’s equally as beautiful as before, there’s just a little extra Tessa now,” Grainne told the Daily Mail. “Tessa hasn’t mentioned her new ‘nose’ and it has been such an inspiration to watch her take the surgery in her stride.”
Through her condition, this little girl is giving hope to families around the world.
Tessa’s since had her second surgery, and will endure more in the future, according to Derry Now but her struggles had a positive effect—as Tessa was the first to undergo this surgery, the experience paved the way forward for other children afflicted with arhinia.
“I’ve been campaigning since she was born to raise awareness about the condition and how wonderful arhinia children are,” Grainne told the Daily Mail. “We are excited to share the results of Tessa’s surgery and believe it will represent a very positive option for other children with arhinia.”
Tessa acted as the harbinger of things to come, but it was not an easy journey.
“If we had known whenever she was born, that one day that she would be sitting on a trampoline with her older brothers and sisters, laughing and running and causing all sorts of mischief, it would have changed everything,” Grainne told the BBC News. “We would have cried a whole lot less and worried a whole lot less.”
But thankfully, her story and struggle has given hope to families with children just like her all around the world.
Watch the full story below: