“Proud mom, Gráinne Evans, 30, said:
“At first 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?
“But ever since we got her home she’s
grown every day, smiled more and
shone brighter, and the more she
shines the more her differences fade
into the background.
“Tessa is so petite but she’s the most
determined little girl I know, she
adores her big brother and sister,
copies everything they do and despite
her ‘disabilities’ is already a typical,
fearless toddler who climbs the
furniture and loves to dance.
“Everyone who meets her instantly
falls in love with her. We just want her
to inspire other people like she
inspires us.”
Gráinne, who chose to have a natural
water birth, had no idea that her
daughter would be born without a
nose until she lifted her new-born out
of the birth pool for the first time.
Weeks after giving birth to her
extraordinary daughter, Gráinne
discovered a horrifying journal online
which stated that babies born like
Tessa had poor mental and physical
development and implied parents
should be given the option to
terminate their pregnancy.
The full time care giver and mother-
of-three from Maghera, County Derry,
says that her daughter proves that
statement wrong and wants to raise
awareness about the condition and to
make sure every child born with
arhinia around the world is loved and
looked after.
Gráinne said: “I was so excited to
have a natural birth for the first time,
but as soon as I saw her face I knew
something was wrong.
“I was in shock and I just froze. The
midwife cut the cord before I could
even say anything and whisked her
away from me.”
Gráinne’s pregnancy had been
completely normal but at her 20-week
scan an abnormally flat facial profile
was detected.
Gráinne and her husband Nathan, 32,
a nightclub manager, were told to
prepare to make difficult decisions but
the follow up 3-D scan and tests
revealed Tessa was perfectly healthy
and everything was normal.
But sadly what was meant to be the
happiest moment of Grainne’s life
turned into the most horrifying
nightmare.
Gráinne said: “The whole thing is a
complete blur and I don’t remember
much, Nathan has had to fill in the
blanks.
“There were alarm bells ringing and I
was so frightened I couldn’t stand
without fainting, I just wanted to hold
my baby and know she was okay.
“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. 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.”
It wasn’t until a few days later that
Grainne and Nathan realized how rare
their daughter’s facial anomaly was.
There are just 47 recorded cases in
the English records of people with
partial or full anomalies.
Gráinne said: “Nathan has been so
strong from the very beginning. He
accepted it and loved our baby girl
instantly, even sending me a picture of
her from NICU thanking me for the
best Valentines present ever.
“I couldn’t have coped without him
and the incredible support of our
extended family.”
Gráinne worried about what people
would think of her daughter’s face.
“I found coming to terms with how
others might react to Tessa’s
difference a real struggle and was too
scared of what people would think of
her to even go outside at first.
“The charity ‘Changing Faces’ was a
great source of support and
information as was the cranio-facial
charity ‘Headlines.’
“Wearing Tessa in a sling gave me the
confidence to first go out in public,
since it gave me control over who
could see her.
“Now when we are out and about I’m
no longer afraid of what people might
think. In fact I think she will help
people see that ‘different’ can be
beautiful too.”
Now, the family looks forward to what
the future might bring.
Gráinne said: “As a family we have
been through so much in the last
year. We’ve laughed, cried, struggled
and watched our baby succeed.I found coming to terms with how
others might react to Tessa’s
difference a real struggle and was too
scared of what people would think of
her to even go outside at first.
“The charity ‘Changing Faces’ was a
great source of support and
information as was the cranio-facial
charity ‘Headlines.’
“Wearing Tessa in a sling gave me the
confidence to first go out in public,
since it gave me control over who
could see her.
“Now when we are out and about I’m
no longer afraid of what people might
think. In fact I think she will help
people see that ‘different’ can be
beautiful too.”
Now, the family looks forward to what
the future might bring.
Gráinne said: “As a family we have
been through so much in the last
year. We’ve laughed, cried, struggled
and watched our baby succeed.Ggh,
sneeze and catch a cold, and despite
her difficulties, she always has a smile
on her face.
“I found coming to terms with how
others might react to Tessa’s
difference a real struggle and was too
scared of what people would think of
her to even go outside at first.
“The charity ‘Changing Faces’ was a
great source of support and
information as was the cranio-facial
charity ‘Headlines.’
“Wearing Tessa in a sling gave me the
confidence to first go out in public,
since it gave me control over who
could see her.
“Now when we are out and about I’m
no longer afraid of what people might
think. In fact I think she will help
people see that ‘different’ can be
beautiful too.”
Now, the family looks forward to what
the future might bring.
Gráinne said: “As a family we have
been through so much in the last
year. We’ve laughed, cried, struggled
and watched our baby succeed.
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