- Tessa Evans was born with arhinia, meaning she has no nose, no sense of smell and no sinuses - but she can cough, sneeze and catch a cold
- Is the first person to have a special cosmetic nasal implant fitted
- Over the years it will encourage a new 'nose' to grow out of stretched skin
- She will have a final nasal prosthetic fitted when she is a teenager
Tessa Evans,
two, was born without a nose (above) but has become the first ever
person to have a cosmetic nasal implant fitted to help create the
missing appendage. She is pictured (below) after the procedure
Tessa she
has just undergone a pioneering operation to have a mould inserted into
her face, to stretch her skin and slowly build the missing facial
feature. It will take place in a series of ops over several years
A
two-year-old born without a nose has become the first person to have a
cosmetic nasal implant fitted to help create the missing appendage.
Tessa Evans,
from Maghera, Ireland, suffers from an exceptionally rare medical
condition called complete congenital arhinia, meaning she was born
without a nose.
Arhinia is
so rare that there are only 47 cases reported in medical history, and it
leaves Tessa with no sense of smell and no sinuses, although she can
cough, sneeze and catch a cold.
Now, she has
just undergone a pioneering operation to have a mould inserted into her
face, to stretch her skin and slowly build the missing facial feature.
She will have more surgeries to have the implant replaced as she gets older, so the nose 'grows' with her face.
Then, when
she is a teenager, she will receive the final prosthesis, which will be
tattooed with light and dark shades so it looks like a real body part.
Normally,
people who need a nasal prosthesis have a procedure to rebuild their
nose when they are a teenager, when the face has stopped growing.
But Tessa's
parents Grainne, 31, and Nathan Evans, 33, made the tough decision for
Tessa to have this new procedure to begin creating a nose while she is
still a toddler.
They say they hope this will avoid more invasive surgery in the future.
Mrs Evans, a
mother-of-three said: '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.
'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.
'Normally
the advice is to wait until teenage years when the face has stopped
growing and construct a nose using bone and skin grafts which is quite a
major undertaking and leaves scarring.'
This process
is much less aggressive and Tessa's nose will grow with her instead and
will prevent major surgery when she's older, she said.
She added:
'With Tessa being the first patient to have this done we had to put a
lot of trust in her surgical team that we were making the right decision
for Tessa's future.
'But thanks to Tessa paving the way, another little girl in the UK will have the same procedure in the coming months.'
In an
operation carried out at Great Ormond Street Hospital, London, a plastic
surgeon used a 3D printer to make a model of Tessa's skull.
Then, he used a substance like modelling clay to design a small mould that fitted to her face underneath her skin.
The custom made implant was then produced in medical grade material, ready for the operation.
It was inserted via an incision behind her hairline, meaning there is no scarring at all on her face.
Tessa will undergo surgery every couple of years to ensure her nose 'grows' at the same rate as the rest of her body.
A final prosthesis will be fitted when she reaches her teenage years.
Mrs Evans
said they were delighted with the result: 'We have been totally thrilled
with the result, she's equally as beautiful as before, there's just a
little extra Tessa now.'
'Tessa hasn't mentioned her new "nose" and it has been such an inspiration to watch her take the surgery in her stride.'
Tessa's arhinia was first detected during the 20-week scan which showed she had an abnormally flat facial profile.
Mrs And Mrs
Evans were told to prepare to make difficult decisions, but the follow
up 3D scan and tests revealed Tessa was perfectly healthy and everything
was normal.
But the birth was extremely traumatic.
'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,' Mrs Evans
recalled.
'I kissed her forehead and told her I loved her before they took her away.'
'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.
'She spent her first five weeks in a neonatal intensive care unit which were undoubtedly the worst weeks of my life.'
Tessa was
also born with other problems related to her condition, including a tiny
hole in her heart and problems with her sight.
At just 11
weeks old she needed surgery to remove a cataract on her left eye but
complications left her completely blind in that eye.
She also needed a tracheostomy fitted to allow her to breathe while eating and sleeping.
Despite having a difficult start to life, Tessa has always been healthy and met all her milestones, her mother says.
Mrs Evans
said: 'Tessa is like any other little girl, she loves playing with her
brother and sister, she's always smiling and has never let her condition
stop her from doing anything.
'Everyone who meets her instantly falls in love with her, we just want her to inspire other people like she inspires us.
'When the can first showed abnormalities I just couldn't understand it, I didn't even know it was possible.
'How did my little girl not have a nose? Was she going to live? Would anyone be able to help her?
'Initial
research advised to terminate my pregnancy, but I've been campaigning
since she was born to raise awareness about the condition and how
wonderful arhinia children are.'
Mrs Evans
has since brought over 20 families together across the globe and there
is now a support group for the first time ever to share experiences.
She added: 'We are grateful for every opportunity to raise awareness of this extremely rare condition.
'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.
'We can't thank Great Ormond Street Hospital enough, it is one of the most uplifting and happy places we have ever been.
'We are
extremely fortunate to have access to these world class consultants and
surgeons and to have this kind of treatment on our NHS.'
Jonathan
Britto, Tessa's craniofacial plastic surgeon, and consultant at Great
Ormond Street Hospital (GOSH) said: 'After the operation Tessa looked
immediately more featured.
'Tessa is a completely bubbly, playful, and happy child, we are lucky to be entrusted with her care.
'Her prosthesis will heal nicely and her face will slowly grow now around the implant to accommodate the nasal shape.
'When she
has the final implant when she's a teenager, the skin can be tattooed
with nuances of light and shadow to finally complete the staged
aesthetic reconstruction.
'Tessa's
case is extremely unusual. However this new technology combined with the
longstanding principle of tissue expansion will help other children
with arhinia, as the previous options were poor, and involved complex
surgeries with higher risk and less reward.'
HOW WILL SURGEONS CREATE A NEW NOSE FOR TESSA?
In an
operation carried out at Great Ormond Street Hospital, London, plastic
surgeon Jonathan Britto used a 3D printer to make a model of Tessa's
skull.
Then, he used a substance like modelling clay to design a small mould that fitted to her face underneath her skin.
The custom-made implant was then produced in medical grade material, ready for the operation.
It was inserted via an incision behind her hairline, meaning there is no scarring at all on her face.
Tessa will undergo surgery every couple of years to ensure her nose “grows” at the same rate as the rest of her body.
A final prosthesis will be fitted when she reaches her teenage years.
Mr Britto told MailOnline this course of treatment is much preferable to methods used in the past.
He said: 'In the past attempts to rebuild a nose would leave scars on the face.
'The "nose" would not function as an airway and they didn’t achieve a good aesthetic result.
'Teenagers would end up with something that didn't look like a nose.'
He added: 'With the new method, I'll make a new implant as Tessa grows, at each stage in her growth.
'By the time she is adolescent I’ll have expanded the tissue.
'When she is a teenager I’ll make a definitive nose, and we’ll tattoo in nostrils and creases.
'I'm really excited about it. She won’t have any of the downsides of previous methods.'
WHAT IS ARHINIA?
Arhinia is the absence of the nose and parts of the olfactory (the sense of smell) system.
One type is
congenital arhinia (where the person is born with it), another is
acquired arhinia (loss of the nose to cancer, infection, or accident).
It can be
total (complete absence of the external nose and all/or parts of the
olfactory (the sense of smell) system, the website Widesmiles reports.
Or, it can be partial (only parts of the external nose and olfactory system is missing).
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