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Hi, every time I
would start my story the tears would
flow and I would stop, but I decided
that my new years resolution would
be to get my story out there,
so here goes.
After my first child
Georgia was born in June 2004 I
thought when I fell pregnant again
this would just be so very easy, I’d
had pre-eclamsia with my first
pregnancy but thought surely this
could not happen again… well I was
wrong!!!!
My son Jhye came into
the world a little earlier then
expected at 36 weeks, we thought he
was going to be born a healthy
little baby boy after many scans
during my pregnancy (I had
pre-eclamsia again) it was not until
the doctors checked him over they
found he had a heart murmur, and
like many of you I was told ‘it is
normal’ so didn’t really think to
much about it, Dr Cameron Ward (our
lifesaver) came and checked him out
further that’s we found out he had
'Aortic Stenosis' (aortic valve was
bicuspid and narrow) At 2 weeks of
age and only weighing about 2.8kg he
had the catheter operation which was
not entirely successful although it
did buy us a few weeks before
requiring ‘open heart surgery’, we
were then having regular weekly
checkups with Dr Ward and at 8 weeks
his ‘gradient peek’ was 65 - 70 the
time had come there was no delaying
it now, they could not wait any
longer he had not grown enough for
them to attempt the catheter again
so 'Open Heart Surgery' was the only
way to go...
My Heart
& Soul drop to the floor when I was
told I thought my heart was breaking
in 2, My little tiny precious little
baby boy (2.9kg) was going to go
through what I thought was the most
horrible ordeal of this little life,
in fact of anyone’s life, we were
living the unknown, we were so
unsure as to if he was going to be
ok, 10 years earlier I had lost my
father to cancer and thought I would
never come across pain like that
again, until now…. This was
magnified by 100%, when it is your
own creation going through this and
so little, I just did not know what
to think or say to anyone especially
this precious little man who was
needing me to be strong for him,
myself, my husband and of course my
daughter Georgia (heart healthy).
The surgery came and
I faced it head on... we had a few
hiccups along the way, difficulty
getting off the heart/lung bi-pass
machine, blood transfusions, fluid
around the heart that would not
drain, veins collapsing and this
list would go on and on, and I felt
like every time we would move a step
forward we could go 2 or 3 steps
back, but finally after about 6 days
after the op I got to hold him and
oh my god, I thought that first hold
after they are born is special…. No
way this topped it, like you
wouldn’t believe I felt like in that
10mins or so that I held him know
one else existed just him and for
the first time since he went in for
the operation he opened his eyes and
looked up and me and I could see in
his eyes he knew I had been there
the whole time, but another hard
time came when I actually had to
hand him back to the doctors I did
not want to let go, the doctors kept
telling us they were very pleased
with his progress however his
gradient peek was still around 30
after the operation, I know they
hoped for alot less.... that was in
October 2006 and at this stage some
how he has define the odds and
amazed the doctors and has not
required surgery again, we go to Dr
Cameron Ward every 3 months for a
ECHO & ECG and each time the
appointment comes around I of course
get sick in my stomach at the
thought of going through all of this
again, someone asked me if it was
easier the 2nd time around, I
actually think it is worse because
you know what to expect, you know
what they look like when they get
out of surgery, probably the only
good thing that has happened since
his open heart surgery is that now
he is a bit bigger so they are going
to attempt the catheter operation
again so at least it is not as
invasive and anything is better then
‘Open Heart Surgery’ again.
I
do however know how very lucky I am,
I still have my baby they are people
out there who have had to deal with
the loss of a child & that is the
most horrific pain of all, I feel
he knows he’s extra special, I
sometimes think he knows what he has
gone through, he seems to really
appreciate life and everything it
has to offer.... and I always tell
him to reach for the stars and
beyond.
I would like to say
a big thank you to everyone within
the Heartkids family, I read your
stories and it really does give my
such inner strength more then I am
sure some of you can imagine…
I think the one
thing that parents without heartkids
can’t understand is that having a
child with a heart condition is like
living the ‘unknown’ and for someone
like me that is very hard as I like
to plan everything.. so this was a
bit of a shock for the system.
Love
Tarnya
Mum to Heartkid Jhye
(18months) and Heart
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