| Julie
Campbell's story
My story begins
similar to any other
of it's kind; a
couple awaits the
birth of their first
child full of hopes
and dreams for a
perfectly healthy
baby. Wyatt James
Campbell came into
the world on March
13, 1998 at 5:04
A.M. welcomed by
happy parents,
grandparents and
friends. But what we
would soon learn is
that our first time
parent dreams would
slowly but surely be
crushed.
Wyatt's second
day of life would
prove to be very
scary for us. He
never eliminated the
first stool called
meconium and because
of this he became
distended and was
immediately taken
off breast milk and
taken to radiology.
the diagnosis was
Hirschprung's
Disease, meaning he
was missing nerves
in the end of his
colon that signal
the brain to
eliminate the stool.
He was rushed to
Children's Hospital
in San Diego to
undergo further
testing, which was
very hard for new
parents to watch.
Later we were told
by his surgeon that
this was something
successfully treated
with surgery. We
just had to take him
home and manually
help him "go" which
I won't go into
detail about). Wyatt
needed to gain some
weight and get a
little larger to
undergo the surgical
repair in about six
weeks. He didn't
make it that long
and at four weeks of
age began
hemorrhaging from an
intestinal infection
due to the stool
that wasn't getting
completely
eliminated. So, he
was taken off food
again and after the
infection was under
control he had his
first surgery: a
colostomy. When he
was about a year
old, he could go
through the second
part of the surgery
which would return
his intestine to the
proper position. We
were very stressed
about our baby going
through all this,
but we still had the
confidence that
after all this,
everything would be
perfect.
In May of 1999,
at thirteen months
old, Wyatt went
through a procedure
called a "pull
through". We spent
two weeks in the
hospital rarely ever
leaving his side,
but on Mother's Day
I finally got to
bring my little boy
home, who by this
time was looking
pretty scrawny.
After lots of
nursing him back to
health he actually
got cute little
rolls on his arms
and legs.
It was a joy
watching him smile
and laugh at us and
his cocker spaniel
but after a while,
it became a concern
of Wyatt's
pediatrician that he
wasn't crawling at
fourteen months. I
was so wrapped up in
the health issues
that I just kept
blaming his slowness
on all of his
hospital stays (of
which there were a
few more that I kept
out of this story).
We got Wyatt set up
with a wonderful
physical therapist
who really worked
him hard! We saw
improvement in his
strength and balance
but he was not so
thrilled with the
whole idea of having
to work. I kept
questioning the
therapist about what
could bring on these
delays but she was
very vague and just
usually said she's
seen this in
premature babies.
Four months later
on 9/9/99 ( I hate
that that date is so
easy to remember)
when Wyatt was
eighteen months old
we got more
depressing news,
Wyatt had Cerebral
Palsy. My husband
didn't seem as
shocked as I was and
he told me he'd
always had the
feeling that
something else was
wrong. I was so
shocked all I did
was cry the whole
way home and every
day for many weeks
after that awful
moment I heard the
neurologist utter
those words. It's
unfortunate they
just send you away
with this news and
an appointment for a
follow up visit in
six months.We barely
even knew what CP
was and we had to
navigate through
tons of information
we didn't probably
need, for there is
no way to predict
what kind of life
your child will have
or what kind of
impact it will make.
When we went back
and told the
physical therapist,
she just shook her
head knowingly
because she had
already figured it
out having seen the
signs many times
before. She couldn't
tell us because she
is not allowed to
diagnose, only
treat.
As the weeks and
months passed, we
enjoyed our little
boy mostly in the
privacy of our own
home and with
family. When other
mothers were talking
about what new
things their babies
were doing I smiled
on the outside but
cried on the inside
because I couldn't
say my baby was
doing much of
anything. Not all
was bad, we loved
our son more than
anything on this
earth and we used to
say that every day
seemed like
Christmas and we
couldn't wait to get
up in the morning
and look at that
beautiful smiling
face!
A really exciting
thing happened a few
days after Wyatt's
second birthday-he
began to crawl. We
were so proud of
him! It took another
year when Wyatt just
turned three that he
began to take his
first steps and that
too was a joyful
day. We enrolled
Wyatt in swimming
lessons in the
summer and then
added horseback
riding, determined
he would get to do
the same things as
other children, he
just might not do
them as well. He
went to preschool,
then kindergarten
and soon everybody
seemed to know
Wyatt. He couldn't
say more than a few
words, he mostly
"hooted" my word for
the loud sounds he
makes). But, his
favorite word has
always been a big
"HI!!" and he'll
have a big smiled on
his face when he
says it to anyone
and everyone.
When Wyatt was
about four years old
he started having
seizures. We were
somewhat prepared
for this, knowing it
was common for kids
with CP. He went on
medication and we
regularly see the
neurologist. On one
of these visits the
doctor brought a
name of a possible
syndrome that fits
many of Wyatt's
"differences".
Genetic doctors told
us they classify his
anomalies as a
syndrome, but they
didn't know which
one or what to call
it. Now they had a
name, Mowatt Wilson
Syndrome. Danny and
I had taken many
years to decide to
have another child,
but we were so
afraid it was
something we had
passed on to him.
After lots of soul
searching and
looking into all our
options, we did have
our second child
five years after
Wyatt was born.
When Wyatt and I
were in the waiting
room to see the
genetic doctor to
discuss just what
this syndrome was
all about, we saw a
young girl a few
seats down from us
who was seated in a
wheelchair. She
appeared to have had
her arms and legs
amputated above the
knees and elbows. I
had no idea what had
happened to this
girl or if she had
been born this way
but I figured
there's always
someone worse off
than Wyatt, and I am
just happy he is
healthy. On her
wheelchair was a
bumper sticker that
read, "I'm in no
mood to be stared
at". So who do you
think went right up
to her with a big
"HI!"? Wyatt. He
proceeded to say hi
to her about ten
times until we were
called into the exam
room.
The geneticist
told us about the
conditions
consistent with this
syndrome and since
Wyatt was already
six years old, I had
become very
accepting of the
whole issue, so
there wasn't that
same shock as the
first time around. I
just wanted any
information I could
get to help him. We
already knew he was
mentally retarded
and learned that
this was consistent
with Mowat Wilson.
Later in the visit,
she told me if we
wanted more children
they could test the
embryo for this
genetic mutation and
that it was not
something we passed
on to our son. I
told her we had a
healthy daughter and
we weren't
interested in having
more children. I
also told her that I
wouldn't make that
choice; to find out
my baby wasn't
perfect so I could
terminate a
pregnancy or toss
out an embryo. I
don't mean to
suggest that doing
that is an easy
decision, only that
if I had known about
all of Wyatt's
medical problems
before I had laid
eyes on him, it
might have sounded
too overwhelming to
go through with.
Being a Christian, I
also have certain
convictions about
God's design for all
of us, and I truly
believed there was a
gift that Wyatt had
that I could
nurture.
On the drive home
I was going over all
the information in
my head, especially
the part where I
told the doctor I
wouldn't want to
find out this kind
of diagnosis to
determine if I would
continue a pregnancy
, after all I felt
what Wyatt brought
to my life far
outweighed the
difficulties. And
then it hit me on
the head like a ton
of bricks-God had
shown me the reason
for Wyatt to be the
way he is. Only
someone like Wyatt
could have looked at
the girl with the
missing arms and
legs and not seen
that, but the little
girl inside that
just wanted to be
treated like anybody
else. It was then I
decided that what he
had was not
necessarily a
handicap for him. I
had more of a
handicap in my mind
because I couldn't
look at that girl
without some kind of
pity or judgment. I
knew now that God
made Wyatt exactly
as He wanted him, to
teach others
tolerance, love and
acceptance no matter
who you were on the
outside. Wyatt is an
inspiration to me in
my relationship with
God and others
because he is the
"Angel in my house". |