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Groundbreaking op for girl born without a nose

By Victoria O'Hara

Published 04/06/2015

Little Tessa with mum Grainne this week
Little Tessa with mum Grainne this week
Grainne and Nathan Evans with Tessa after the operation
Little Tessa before the op
Tessa Evans after her operation

The mother of a toddler born without a nose has spoken of her joy and relief that a pioneering operation to have a 3D cosmetic nasal implant fitted was a success.

Little Tessa Evans suffers from an exceptionally rare medical condition called complete congenital arhinia, meaning she was born without a nose.

Only 47 cases have been recorded in medical literature in recent history.

The two-year-old is the first person to have the custom-made nasal implant fitted. This means as Tessa grows it will encourage a new 'nose' to grow out of stretched skin.

Speaking last night, her mother Grainne Evans (31) from Maghera, Co Londonderry, said it was the "hardest decision" both her and husband Nathan (33) had to make as they felt their daughter was perfect - but are delighted with the outcome.

Tessa underwent the groundbreaking procedure at Great Ormond Street Hospital in London at the end of May. The two-hour operation carried out by surgeon Jonathan Britto involved the first part of the implant fitted through an incision in Tessa's hairline.

She will have the implant replaced as she gets older, so the nose grows with her face. Eventually a tattoo artist will draw on nostrils and shading.

"It has been an emotional journey, but we are just happy to be home and Tessa is well," Grainne said.

She explained they met Mr Britto when Tessa was nine months old.

"He came up with this idea to have an under the skin prothesis," she said.

"It had never been done before and never been an option before.

"They printed a 3D model of her skull and used modelling clay to design whatever shape they wanted. They sent that off to be made and on May 20 she had the surgery to fix the full implant to her midface."

Grainne, a mother-of-three, admitted the time during the operation was "terrifying".

"We thought she was so beautiful and so perfect, to let a surgeon do anything to change her was just heartbreaking," she said. "I know the night before her surgery me and her daddy were just in tears."

The couple - who have two other children, Cassie and Cathal - knew this was the best option for their girl.

"This had the potential to give us really good results without ever making a mark on her face. There would be no grafting or scarring, but we had to start when she was quite small so they could put in bigger implants and stretch the skin. We knew we had to make the decision now."

Tessa's profile has now changed, and although she doesn't have a nose, her surgeons were able to raise her mid-face/nasal area up and place a nasal implant. This will be slowly developed over the years through more procedures. Grainne said: "We are delighted with the results and thankful that she still looks like Tessa - there is simply a little more Tessa than before."

After Tessa was born her parents were told the option was she would have to wait until she was a teenager to have reconstructive surgery.

This led to a determined Grainne contacting many specialist cranial facial units in England.

"I spoke to every nurse who would talk to me and the head nurse from the cranial facial unit at Great Ormond Street recommended the surgeon Jonathan Britto," she said. "This new idea is truly cosmetic and the benefits we saw was that it would be as a family, it would be gradual and not that one day you would be living with her beautiful face, and then get to a teenager and it is drastically changed.

"But we felt like, psychologically, for her that would have been a harder transition."

The couple were told doctors had detected a problem with Tessa during a 20-week scan.

"But all tests came back normal so we had to just trust the rest of the pregnancy and we had lots of scans and nothing would be picked up," she said. "So after she was born was a huge shock."

Grainne said the birth on Valentine's Day in 2013 was traumatic, and she only had a short time with Tessa before she was taken away for her to be stabilised.

She spent five weeks in a neonatal unit and has also undergone surgery for her vision, and needed a tracheostomy to allow her to breathe while eating and sleeping.

But she said the support from family and friends has been overwhelming and Tessa is a "happy, bubbly" child back playing with her brother and sister. She is also overwhelmed by the number of families contacting her through social media with babies and children like Tessa from around the world who felt they were "on their own".

"I set up a support group on Facebook and I've just been working so hard so that other parents don't go through what we did through a lack of information," she said.

"Every email means so much because what I'm giving Tess is a world where she is not alone. When she was born I thought my little girl would never see anyone who looked like her, and that's now not true."

Further reading

Kieran Sorkin (9) has ears created from ribs fulfilling wish to wear sunglasses  

Brave Tessa Evans' amazing story goes around the world thanks to Belfast Telegraph

Mum of Tessa - born without a nose - opens her heart about family's struggle for information on rare condition  

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