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Our much-anticipated
firstborn, Jack was born happy and apparently
healthy. My husband, Mark, and I were
delighted at his arrival, and soon hanging
on for the rollercoaster of expected
challenges that parenthood brings.
I was a 35 year-old "career chick"
- our decision to bring Jack into our
lives was clear and very much planned.
I had taken vitamins, we had had scans,
tests and been assured and reassured.
I had read books and websites on childbirth
and newborns and thought I was pretty
well informed about the path that lay
ahead of us. I was wrong.
It was only a few weeks after our
nine-pound bouncing babe arrived that
things started to go awry. We noticed
how much he sweated, especially when
feeding. How his suckle seemed to fade
more quickly during increasingly frequent
feeds. How he simply would not settle
for any real length of time.
In a bid to improve
my mothering skills (which I assumed
must be suspect) I visited the local
community health centre for a day stay.
Nurses there battled to settle Jack
and soon assured me the problem was
not my skills. Reflux (which Jack had
previously been diagnosed with) was
assumed to be the culprit and we were
directed to consult our paediatrician
for better medications.
For some reason I
decided to make this visit in person
instead of simply phoning. Usually a
jovial sort, Dr Bruce was a little more
serious this visit, and noted some worrying
signs - especially Jack's strange sharp
breathing. We were bundled off to have
a chest x-ray as a precaution and then
went on home, concerned but not alarmed.
A message on our answering machine from
Dr Bruce urging us to head to the Prince
Charles Hospital (just a couple of suburbs
away) raised our eyebrows, but still
we thought "just precautionary".
Paediatric cardiologist
Dr Rob met us at the Hospital's Children's
Ward ... we chatted initially and then
fell silent as we watched him examine
Jack. He spent what seemed like an age
silently huddled over the echo machine,
watching blurry images of Jack’s heart
and bloodflow. It was now that those
first icicles of fear began. We stood
rooted to the spot, disbelieving and
shell-shocked as he described Jack's
condition - an uncertain number of holes
in the heart. I don't think we really
heard anything beyond "Your son is in
Heart Failure...".
To me (back then) these words almost
hung like a guillotine over our helpless
baby - heart failure. Horrible, unknown,
threatening - very definitely not good.
Later I would understand more, and fear
(slightly) less but on that first night
there, in the Children's Ward, was no
room for anything else in our heads.
The bizarre thing was that I had
been a regular visitor here during my
pregnancy – a childhood friend’s oldest
daughter had had a heart transplant
just a few months earlier. Then, I had
looked around the ward and at the babies
and children with their monitors and
“big zipper” scars down their chests,
and felt great sympathy. Now we were
inside their world and the view was
somehow much more terrifying.
We would not get Jack home for another
10 days. In this time our learning curve
was sharp and often shocking. Doctors
would discover our little man had multiple
VSD's (Ventricular Septal Defects -
including many "Swiss cheese" holes
at the base of the ventricle muscle)
and Jack would undergo his first heart
surgery.
Our surgeon, Dr Pohlner, performed
a "closed heart" operation - which meant
that while they were working very near
his heart, Jack would not need to be
on bypass machine. Dr P inserted a pulmonary
artery band to stem the flow of excess
blood to his little lungs; designed
to buy him some "growing time" before
open-heart surgery could repair the
defects. Jack would also go onto numerous
medications to help him deal with his
heart failure. We battled to get our
heads and emotions around the challenges
set for us, as our families sought to
find the elusive words and actions to
soothe us.
Unfortunately Jack went deeper into
heart failure as he struggled to grow
into the band, and he soon lost all
interest in feeding. We reluctantly
returned to hospital and began tube
feeding - a regime that would become
a constant and painful part of our lives
for the next 8 months. Desperate to
keep Jack on breastmilk, I would struggle
on for a few more weeks - trying to
express breast milk to put down his
tube. Every four hours I would start
my routine - set up, express, bag the
milk, clean up, set up his tubes, slowly
feed it to him, clean the tubes (often
changing him and sheets after another
bout of projectile vomiting) and then
try to get sleep for the hour and a
half I had before it would start again.
In the end I admitted defeat.
We look back on this time now as
you would a nightmare - Jack battled
and after bad experiences with naso
gastric tubes and we eventually resorted
to additional surgery to insert a Peg
tube (feeding directly into through
his stomach wall). It was an awful decision,
but proved a good one for Jack. The
vomiting slowed and he gradually began
to show interest in taking milk and
solids orally. (It would be another
4 months however before he took anything
resembling a full feed.)
During this time we were lucky to
discover good support (and a pump) through
the Royal Children's Hospital speech
therapy unit and Nutricia Australia.
I have endless respect for anyone who
can tube feed a wriggling baby with
open syringes for any length of time!
That pump saved my sanity - I simply
didn't have enough hands to feed and
settle a very unhappy and constantly
vomiting Jack on my own.
When he was nine months of age, a
catheter procedure (where a tiny tube
with camera in place is inserted into
a groin artery and threaded up into
the heart) showed Jack had grown enough
to make his PA band tight. This in turn
signalled the time for his cardiac repairs
- repairs that now included fixing newly
discovered holes in the top half of
his heart (ASDs). It was now a matter
of waiting until the surgeons had an
appropriate opening in their schedules
for him.
We finally got the call when Jack
was 10 months old - suddenly the day
we had anticipated (and dreaded) for
8 months was here. We had just two days
to prepare ourselves, make the frenzied
phone calls to gather family support,
and do the special little things we
felt important. We visited a pet shop
with a wall full of aquariums - Jack
had really responded well to the two
goldfish in the Children's Ward (Wallace
and Grommet) and he barely blinked with
wonder at seeing hundreds of fish as
we slowly wheeled him through the shop.
Many photos were taken in these two
days - we didn't ever let ourselves
think we would lose him, but I somehow
needed as much evidence as I could gather
of his very special place in our lives.
We handed our gorgeous little man
over to Dr P with mixed feelings - both
confidence in staff and terror at the
possibilities battled for supremacy.
I cannot really recall the hours
that followed - we were in some sort
of limbo, wondering, praying, not wanting
to go too far from the featureless waiting
room in case our call came.
Five hours later, we stood beside
his ICU cot watching every monitor like
hawks and stroking his still little
hands. Jack's first surgery had prepared
us a little - the wound, the million
tubes, the monitors, the stillness,
the waiting and the watching. Nothing
makes that particular vigil any easier,
although Nurse Vince was fabulous and
very patient with our endless questions.
Each step was cautiously celebrated
- the extubation, each line out, the
weaning off drugs. To our relief Jack
improved quickly and was back in the
High Dependency Unit within 24 hours.
Despite an initial fever, Jack made
it home in a week - incredible really
considering the seriousness of his surgery.
And while Dr P warned that Jack still
had some residual holes, it as if someone
had turned a light on in our son.
Within days, Jack was eating
almost normally - hungry and letting
us know about it! Seeing him demand
food still brings (happy) tears to my
eye. All the projectile vomiting, the
gray pallor, the lack of energy and
indifferent attitude were soon bad memories.
We often pinch ourselves to make sure
our "normal" mealtimes are real and
not fantasy.
While Jack's heart condition has
taught us to never assume everything
is OK or under total control, we get
a huge kick out of every little milestone
he achieves. For many months, ust visiting
the shops (without the added baggage
of pumps and tubes) was sheer joy. Seeing
people admire our little man's fat cheeks
- oblivious to his "big zipper" scar
hidden under his shirt – still makes
our hearts swell with pride. Little
do they know just how hard earned those
rosy cheeks have been! We even have
whole days now - almost a year down
the track from his "big one" - that
we don't think about his heart problems.
Our gratitude to our support crew
and the medical staff who cared for
Jack is enormous. Our little hero has
been given his chance and we intend
to make sure he follows Dr P's message,
succinctly scrawled on the scruffy signature
bear: "Go for your life Jack"
We have met many friends during our
heart odyssey - parents who have been
thrown much worse challenges, and faced
heart-breaking decisions, little ones
who have put us all to shame with their
amazing ability to forge through the
pain and get stuck back into life with
gusto. Some parents have lost their
little champions; others faced up to
14 surgeries with little hope of success,
to come out victorious - weary but finally
sleeping easier. All seem to share the
most amazing strength, even through
the tears (both happy, sad and those
of sheer frustration).
People often say to us "You have
been incredible, so strong, such great
parents"... and while it is lovely and
reassuring to hear those words, to us
there were no choices. He was sick;
we had to hang in there until our 'team'
got him better. I firmly believe that
we are forced sometimes to dig deep
and find that extra something that gets
us through, a something that makes us
seem "incredible" to someone else looking
in from the outside. I think everyone
has this something extra, but only circumstances
that none of us would choose force us
to actually use it.
We will never forget what has happened
- some slowly fading scars criss-crossing
our son's chest and abdomen will forever
remind us. He might need more antibiotics
than "normal" kids, to make sure the
threat of endocarditis (infection in
the heart) does not knock us back down
again. But we have made a promise to
let Jack live his life - to play, to
fall over, to yell, to skin his knees
and be a normal little boy.
I admit a little part of this biased
mum's heart believes these heart kids
are meant for something great. It is
true that they are already great in
the eyes of their parents - and those
who have watched them climb their heart
hurdles like champions. We will all
watch with a little extra pride in our
hearts.
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