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Tetralogy of Fallot, Pulmonary Atresia, Patent Ductus Arteriosus.
Blissful ignorance for four months! Our long,
anticipated first born Paul Daniel was born at
the Moranbah Hospital. He was a screamer! I was
so happy, it didn’t matter. A clinic nurse
casually mentioned he was a bit dusky at 10
weeks and I thought no more. At 4 months Paul
was at Daycare and my friend Judie (a nurse)
said she was concerned about Paul’s colour. Paul
was due for his needles and the blueness was
mentioned to the doctor. I wasn’t worried when
handed a referral to the Paediatrician in Mackay
(2 hrs away).
Looking
back at photos, we had a blue baby. I must have
been blind…… Thanks Jude!
When the
Paediatrician mentioned heart problems, I felt
the first chill. An appointment was made with
Dr. Chris Whight (Cardiologist) later in the
week at his Mackay Clinic. I was still
optimistic - perhaps a tablet could fix?? Yeh
right!!!!!
Dr. W.
was compassionate. He drew intricate diagrams
and explained Paul had Tetralogy of Fallot and
Patent Ductus Arteriosus (an artery that should
have closed a birth was still open). This artery
was keeping him alive but was now starting to
close. Paul was in big trouble because his
pulmonary artery hadn’t developed. He needed
surgery soon at Prince Charles Hospital. In four
years, he’d need another operation but Dr. W.
said they weren’t sure how to do that! The visit
seemed to slip from bad to worse!! I felt
shocked and upset, but still relieved that
something could be done.
The trip
home was dark and sombre. We rang our families
and didn’t sleep well.
Next
morning, a ringing phone woke me. It was Dr. W -
he’d thought more and advised us to go to PCH
now. A fast 1100km drive later we arrived at PCH.
It was Good Friday 1992 and Paul’s O2 Sats had
dropped from 60% to 22%. Drips went up and we
met surgeon Dr. Peter Pohlner. Surgery went well
on Easter Monday. Dr. P discovered a 2mm
deformed pulmonary artery - enough to graft on
to. How brilliant are the surgeons and how
rewarding must it be to save a life? The
operation at four was no longer required.
Fantastic!
For the
next 10 years I fell asleep. Sure, Paul had his
zipper and every year we’d visit the cardiac
clinic but he was so normal.
Gradually, I noticed the puffing. A trip to the
snow was a wake up call - the thin air flattened
him. Dr. Rob Justo had taken over from Dr. W and
organised catheters and MRI’s from 11 – 14
years. Paul’s Right Ventricle had grown to twice
the normal size.
Last
year (Dec 2006) Paul received a donor pulmonary
valve. The ever-youthful Dr. Pohlner came to the
party again! To the wonderful family who
donated the valve at what must have been a very
emotional time - thankyou so much for giving our
boy a better chance of a longer and healthier
life.
Paul is
now 15, tall, slim and athletic. He loves rugby
league and plays with the Moranbah Miners. A
great job at Dominos funds his teenage pursuits.
My lovable rogue, so full of life looks like
he’s turning out OK!
Matt
(13) and Rachel (11) are healthy. They are
patient children and have given Paul much
support. Their big brother has managed
admissions to five different hospitals.
Non-heart surgeries and pneumonia at 13 have
added variety. He often cops the blame for my
grey streaks! Pneumonia was particularly
frightening with raging temperatures and a
transfer to Mackay. Lymphoma was thankfully
ruled out. Temperature spikes and acute illness
are still troublesome, unfortunately.
Words
cannot describe how Jeff and I felt after our
baby was given a second chance. We decided to
make a yearly contribution to the PCH Foundation
on the 20th April (the date of Paul’s
surgery) to go towards research into Congenital
Heart Disease. I am very pleased that Paul is
now part of a research project investigating the
optimal time to replace the pulmonary valve. I’m
amazed at the gains made in cardiac surgery over
the last few decades. If I’d had Paul’s
problems…. don’t think I’d be here!
Future
health? Lifelong cardiac care is required. The
donated valve has an average 10 year lifespan
and other problems can arise. For a fit lad,
post-op recovery last year was less than
average. A lung collapsed, he had a coronary
artery fistula and now has the added diagnosis
of Gilbert’s Disease (liver condition). We
weren’t expecting problems, so future surgery is
concerning.
Paul has
been very brave. A tough nut! Some things
haven’t been easy to watch. Heartkids seem to
have this common thread of resilience about them
(or is that a dogged determination??). I am
absolutely confident that Paul will live life to
the fullest.
Thankyou
for reading Paul’s story - we are very fortunate
and cannot thank the dedicated staff at PCH
enough. To other families, I wish you the very
best. Take care……
Helen
McKenzie (Paul’s Mum) May 2007
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