© 2023 Nevus Support Australia
Adelaide, South Australia
Two
years
earlier,
2008,
I
gave
birth
to
my
first
child,
Isaac,
which
was
rather
traumatic
due
to
me
having
a
retained
placenta
so
I
was
apprehensive
about
giving
birth
again.
However,
I
was
really
looking
forward
to
that
overwhelming
emotion
I
felt
instantly
after
giving
birth
to
Isaac
and
the
immediate
love
I
felt
as
a
mother
of
a
new
born
baby.
Consultants
kept
a
close
eye
on
the
pregnancy
with
Ava;
identifying
me
as
‘high
risk’
due
to
the
complications
during
the
birth
with
Isaac
and
his
birth
weight
of
9lb
9oz.
The
pregnancy
second
time
around
had
gone
as
well
as
the
first
time
and
finally I went in to labour eight days over my due date.
It
was
like
history
repeating
itself
with
another
long
labour
of
18
hours
but
this
time
I
didn’t
need
the
pain
relief
as
before
as
the
final
stage
of
labour
came quickly and Ava was born weighing 8lb 10oz on the 14th May 2010, 10.50pm.
I was so happy that the birth had gone so well and I remember turning to my husband, Michael, who was crying, looking very overwhelmed.
Whilst
one
midwife
took
Ava
to
weigh
and
wrap
her,
two
midwives
stood
looking
at
each
other
looking
concerned.
I
panicked
as
I
thought
it
was
going
to
be
the
same
story
and
I’d
have
to
go
back
down
to
theatre
to
have
the
placenta
removed
so
I
asked
them
if
everything
was
okay
and
they
told
me
it
was
fine.
It
was
when
they
brought
Ava
to
me
and
the
midwife
was
trying
to
put
her
on
my
skin
that
I
first
noticed
her
body
seemed
to
have
a
huge
mark
on
it.
Her
skin
was
pink
and
the
mark
appeared
to
be
dark
purple;
covering
at
least
half
of
her
stomach
and
back,
down
to
her
thighs.
I
asked
Michael
if
he
had
seen
it
and
he
nodded.
I
asked
the
midwives
what
it
was,
unsure
if
it
was
bruising
and
they
said
they
didn’t
know
but
it
looked
like
a
birthmark.
At
that
moment
I
didn’t
care
if
it
was
a
birthmark,
but
I
wasn’t
convinced
that
Ava
was
going
to
be
okay.
When
I
held
her
I
noticed
she
had
smaller
birthmarks
on
her
face
and
scalp
too.
These
were
almost
black.
This
seemed
unusual
as
I
had
never
seen
a
baby
with
anything
like
this
before.
It
seemed
the
professionals
felt
the
same.
Moments
later,
we
were
surrounded
by
doctors
who
proceeded
to
take
Ava
to
a
changing
table
in
the
private
room
we
were
in,
whilst
Michael
and
I
were
left
confused,
scared
and
in
slight shock. We overheard the doctors talking about melanoma which made us extremely upset.
Michael
had
to
leave
as
it
was
very
late
but
it
was
so
sad
that
he
had
to
leave
with
no
answers.
It
was
difficult
announcing
Ava’s
birth
to
family
and
friends
as
we
were
unsure
how
to
celebrate;
we
weren’t
sure
she
was
going
to
be
okay.
So
Michael
left
to
see
his
family,
but
before
he
did,
a
midwife
said,
‘Well
at least you don’t need to worry about her having one night stands, Dad.’ We were appalled.
The
next
morning
we
were
told
a
doctor
living
in
the
area
was
coming
in
especially
to
see
Ava.It
was
then
that
we
were
informed
she
had
CMN
(Congenital
Melanocytic
Naevi);
that
in
the
thirty
years
he
had
worked
in
the
region
he
had
never
seen
it
and
that
they
needed
to
speak
to
specialists
from
Birmingham
Children’s
Hospital
and
Great
Ormond
Street
as
they
were
experts
in
this
very
rare
condition.
As
he
told
us
of
Ava’s
diagnosis
he
showed
us
a
picture
in
a
very
old
book
which
he
compared
the
appearance
of
Ava’s
‘giant
trunk
birthmark’
with.
It
looked
exactly
like
Ava’s.
Using
such
resources
to
inform
us
was
concerning!
Michael
and
I
made
a
promise
to
each
other
not
to
use
the
internet
to
find
out
more
on
CMN
following
the
advice
of
the
doctors.
We
agreed
to
wait
for
further
information
from
the
experts
in
Birmingham
(Birmingham
was
our
first
choice
as
it
was
closer
to
home).
My
first
night
home
I
waited
for
Michael
to
sleep
and
that’s
when
I
broke
my
promise.
I
wanted
to
know
what
we
were
going
to
deal
with;
I
had
to
be
strong
for
Ava,
Michael,
Isaac,
my
family
and
prepare
myself
(and
family)
for
the
unknown.
To
describe
the
emotions
I
felt
that
night
is
difficult
but to put it simply, I was heartbroken. I wanted it all to be a dream. How were we going to deal with this? What was going to be the outcome for Ava?
In
the
early
days
it
was
very
difficult;
as
we
found
out
more
we
realised
it
was
potentially
life
threatening.
The
consultants
were
also
learning
more
and
more
and
advised
us
that
there
could
be
complications
with
her
brain
and
talked
about
the
possibility
of
her
having
NCM
(Neurocutaneous
Melanosis)
where
the
pigment-containing
cells
are
found
in
the
spinal
cord
and/or
brain.
All
of
the
information
was
huge
to
comprehend
and
it
felt
like
I
had
to
detach
myself
emotionally
to
begin
to
understand
what
was
going
on.
When
we
tried
explaining
to
people
about
Ava’s
condition
we
found
that
many
chose
to
understand
it
merely
as
a
birthmark
and
that
our
concerns
were
simply
cosmetic.
I
found
that
very
frustrating.
It
became
more
obvious
how
rare
the
condition
was
as
we
still
had
so
much
to
learn.
Days
after
her
birth,
Ava
needed
to
have
medical
pictures
taken
and
there
was
a
bed
waiting
for
her
at
Birmingham
Children’s
Hospital.
The
plan
was
to
have
the
top
layers
of
her
large
naevus
removed
(scraped
off)
to
reduce
the
risk
of
malignant melanoma and to improve the appearance of her birthmark which covers approximately 70% of her body.
I
remember
coming
off
the
phone
in
floods
of
tears
as
I
really
had
no
idea
what
we
were
about
to
put
her
through.
It
broke
my
heart
that
this
wasn’t
a
day surgery matter (who was I kidding?) and we would have to leave behind Isaac too. I had no clue. Of course, I just wanted the best for Ava.
Three
weeks
after
her
birth
we
went
to
Birmingham
and
the
Professor
there
took
a
huge
weight
off
our
shoulders.
Because
she
knew
so
much
about
CMN
it
was
a
relief
just
to
hear
her
speak
positively
about
many
cases.
She
decided
that
there
would
actually
be
more
cons
than
pros
if
we
were
to
go ahead with surgery but it was our choice. There was no evidence that it was going to help Ava or reduce the risk of malignant melanoma.
I couldn’t wait to get back in the car for the 3 and a half hours drive back home. There was no way we were going to take the huge risks and for what?
The
next
steps
were
to
observe
her
development
and
watch
out
for
any
signs
of
sickness.
It
was
terrible
when
Ava
was
sick
as
Michael
and
I
would
worry
if
it
was
the
beginning
of
something
terrible
developing.
I
went
back
to
work
and
vowed
to
‘get
on’
to
try
and
keep
everything
as
normal
as
possible.
Ava
had
regular
checks
as
babies
do.
Her
health
visitor
became
concerned
about
her
flat
head;
Ava
slept
so
well
during
the
day
we
would
often
need
to
wake
her.
This
became
a
concern
as
we
would
worry
this
was
linked
to
her
CMN.
Following
that
Ava
was
referred
for
physiotherapy
as
the
health
visitor
was
concerned
about
Ava
being
reluctant
to
bear
weight.
Ava
crawled
much
later
than
her
brother
and
now
as
time
went
on
we
soon
felt
the
pressure
for
Ava
to
begin
walking.
We
tried
not
to
worry
if
it
was
linked
with
her
CMN
and
tried
to
put
it
down
to
her
being
a
late
developer
but
the physiotherapy sessions continued until she started walking.
We
tried
using
various
creams
on
Ava’s
skin
as
she
would
thrust
her
body
and
rub
her
back
in
her
cot.
Her
skin
was
breaking
and
very
dry
so
we
needed to apply steroid creams. We’d get various advice on this but we decided to stick to the advice of the CMN specialists!!!
Ava
had
three
operations
at
Birmingham
Children’s
Hospital
to
remove
the
largest
of
the
smaller
birthmarks
on
her
face
and
foot.
One
on
her
face
had
to
be
done
in
two
steps.
Ava
was
given
gas
to
make
her
sleep
before
they
gave
her
the
anaesthetic.
We
cried
when
she
went
to
theatre
each
time
but we had to keep thinking about what she would want. It is difficult to make such decisions when all we want is the best for Ava.
When
Ava
had
turned
one
year
old
I
had
a
call
from
my
mother-in-law
about
something
she
had
seen
on
TV.
A
young
lady,
Jodi,
appeared
on
’60
second makeover’ and put forward her sister’s name to thank her for helping her deal with her life threatening condition. It was CMN.
She
recorded
the
episode
for
me
so
I
listened
carefully
to
what
Jodi
had
to
say
about
it.
It
was
amazing
to
hear
someone
talk
about
the
condition
with
experience! It was then that I learned about Caring Matters Now as Jodi founded the charity.
I
searched
on
the
internet
and
I
came
across
so
much
more
information!
It
had
contact
details
of
local
members
who
support
families
and
it
even
had
a
Facebook
page
for
families
of
those
suffering
with
CMN.
I
immediately
called
our
closest
contact
in
Bridlington
when
I
was
told
to
immediately
refer
Ava
to
Great
Ormond
Street
Hospital.
So
I
did!
It
wasn’t
simple;
it
took
a
bit
of
paperwork
and
many
phone
calls
to
different
health
professionals
but
the day finally came for her first appointment there.
Doctor
Kinsler
was
amazing.
She
got
information
from
Birmingham
and
knew
a
lot
about
Ava.
On
our
first
visit
we
spent
a
long
time
having
pictures
taken.
Ava
also
needed
an
x-ray
to
check
the
shape
of
her
head.
Even
simple
procedures
were
difficult;
Ava
was
very
young
and
wanted
to
move
about.
We
had
to
grip
her
and
hold
her
down
to
have
pictures
taken
and
x-rays
whilst
she
screamed
and
cried.
The
next
evening
we
received
a
phone
call
to
go
back
to
Great
Ormond
Street
a
week
later.
Ava
was
sedated
to
have
an
MRI
to
make
sure
her
brain
was
normal.
It
wasn’t
pleasant
watching
Ava
fight
the
drugs,
we
had
to
grip
her
to
stop
her
from
hitting
everyone around the bed but finally she came back to recovery and she was fine on waking.
It
was
an
awful
time
waiting
for
the
results.
During
that
time
I
found
a
lump
on
Ava’s
back.
It
was
huge.
I
couldn’t
believe
one
day
there
was
nothing
and
the
next
a
lump
so
big
appeared.
I
called
Great
Ormond
Street
where
they
offered
me
an
immediate
appointment
or
as
an
alternative
to
get
it
checked
locally.
Whilst
I
was
on
the
phone
they
told
me
they
also
had
the
results
back
from
the
MRI…it
was
normal.
What
a
HUGE
relief.
It
was
strange
that
I
felt
like
I
wanted
to
be
so
happy
but
now
we
were
dealing
with
something
else
I
was
scared
to
celebrate.
Ava
had
to
have
an
ultrasound
scan
which
was
extremely
difficult.
She
screamed
as
Michael
had
to
hold
her
down
on
the
bed.
The
results
were
difficult
to
interpret
as
they
felt
they
were
unclear
due
to
Ava
being
so
traumatised
and
not
being
still.
We
were
relieved
to
hear
that
this
lump was completely normal with CMN and in fact in a very common place.
Last
year,
Doctor
Kinsler
told
us
that
Ava
has
CMN
syndrome
which
is
the
term
they
are
using
now
so
all
health
professionals
understand
that
Ava
has
CMN
with
the
exact
facial
characteristics
too.
Doctor
Kinsler
is
tracking
Ava’s
growth
as
she
is
growing
rapidly
for
her
age
which is the focus for current studies linked to CMN.
More
recently
Ava
has
had
extensive
problems
with
her
dry
skin.
She
now
uses
3
different
strengths
of
steroid
creams
when
it’s
at
its
worst
as
well
as
her
emollient
during
the
day.
She
also
has
medicine
to
make
her
drowsy
each
night
to
stop
her
from
scratching
so
much
and
to
ensure
she
gets
a
good
sleep
as
until
now
we
have
had
sleepless nights since birth.
Dealing
with
rude
comments
about
Ava’s
naevi
has
got
easier
over
time;
each
time
we
are
out
as
a
whole
family
Michael
and
I
expect
a
comment
as
this
is
all
we
have
experienced
since
Ava
was
born.
I
have
never
tried
to
hide
Ava’s
condition.
I
was
offered
private
checks
at
home
when
Ava
was
a
baby but I refused and stripped her at the clinic for her weight checks like other parents do.
Moving house became a huge priority for us as we wanted to make sure Ava would be surrounded by caring and supportive staff at school.
We
would
want
that
anyway,
but
knowing
how
supportive
everyone
is
at
Throston
Primary
School
where
I
work,
Michael
and
I
agreed
that
it
would
be
easier for Ava whilst at school to be where I am and also where close friends to me are. Their support has been invaluable.
Ava’s
development
has
been
much
slower
than
average
and
we’re
trying
to
put
all
the
right
steps
in
place
for
her
but
we
are
just
amazed
by
her
resilience.
She
is
growing
up
to
be
a
happy
and
confident
girl
and
that
is
all
we
want.
We
know
we
are
very
lucky,
not
forgetting
to
be
mindful
of
foreseeable problems.
Michael
and
I
have
found
some
stages
more
difficult
than
others
and
it
hasn’t
been
easy
at
all.
However,
Ava
is
mighty
fine.
She
is
adorable
just
like
her
brothers.
We
now
know
what
we
need
to
look
for
and
feel
reassured
knowing
we
can
make
a
phone
call
to
Great
Ormond
Street
Hospital
and
get
an urgent appointment if we wish.
Ava’s development and skin will continue to be monitored every 6 months at Great Ormond Street Hospital and at North Tees Hospital.
I
cannot
imagine
going
through
this
process
without
the
help
from
this
charity.
When
Ava
is
a
little
older
we
look
forward
to
attending
the
family
days
organised
by
Caring
Matters
Now.
This
will
not
only
help
Michael
and
I
by
speaking
with
other
parents
going
through
the
same
but
it
will
help
Isaac
understand
his
sister’s
condition
by
meeting
other
children
with
CMN.
Ultimately,
Ava
will
make
friends
for
life
who
she
can
share
experiences
with
going through the same as her as she gets older. None of this would be possible without Caring Matters Now.
Ava’s Story
By Emma Robins (Ava’s Mum)
Published 2014
This information on this website is for general information purposes only.
It is not intended as a medical reference.
Please talk with your doctor for medical advice.