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Our Heartkids
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JADEN'S STORY |
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My name is
Vivienne Dixon. I live in North Queensland with
my Husband Wayne, my daughter, Jaden and
my Son, Joe. This is my Daughter’s story.
Jaden was born
on Good Friday the 14th April, 1995
by emergency caesarean at the Cairns Private
Hospital. From Day 1 she required oxygen and was
in a humidicrib. On the morning of day 6, an
Echo showed that Jaden had a major congenital
heart defect known as Hypoplastic Left Heart
Syndrome (HLHS) and by lunchtime we were on a
plane to The Prince Charles Hospital in
Brisbane.
On arrival at
The Prince Charles Hospital Jaden was admitted
to the High Dependency Unit where she was
stabilised. 10p.m. that night Dr Dorothy
Radford, Cardiologist, informed us of Jaden’s
condition. She was diagnosed with a Hypoplastic
Left Ventricle, a Patent Ductus Arteriosus
(PDA), a Ventricular Septal Defect (VSD), an
Atrial Septal Defect (ASD), a Mitral Atresia and
an Aortic Hypoplasia.
It was then we
met Dr Pohlner, Jaden’s Surgeon. Jaden underwent
her first open heart operation at just 10 days
old. Her operation lasted 7 hours and was quite
successful. Jaden underwent a Modified Norwood
repair with Gortex baffle to the posterior
pulmonary artery with a 4mm fenestration. An
Aortopulmonary and Ductalplasty with
augmentation of the anterior portion of this
with pulmonary homograft and an artrial
septectomy. After surgery Jaden was intubated
for 48 hours and remained in
hospital for 15 days. After which we were
allowed home to Cairns and admitted to the
Cairns Hospital for a further 2week period as
Jaden was still on oxygen and could not be
weaned off it. As it was Jaden ended up being
on oxygen for the first nine months of her
life. We had to carry her oxygen bottle
everywhere we went. Jaden’s sats were only
between 85 – 92% on additional oxygen.
In August, 1995
we saw a Cardiologist from the Brisbane
Hospital, in Cairns on one of his visits. Jaden
was rushed backed to Brisbane as she was
believed to be in “congestive heart failure”.
Once in Brisbane her Cardiologist, Dr Radford
stabilised her. After a further 2 weeks we were
allowed home. Jaden was now on Lasix, asprin,
Digoxin and Spirolactone. Within the following
year we travelled to Brisbane 3 more times. By
the time Jaden was 1yo, we had had numerous
trips to Brisbane and Jaden was finally off her
oxygen and acting like a “normal” baby. Jaden
has a younger brother Joe (22.10.1996). He does
not have any heart defects.
In October, 1995
Jaden again spent 7 days in the Cairns Hospital.
Luckily this was not heart related but as she
was so sick and only very small it put a great
strain on her and she had to be monitored
closely. Over the next 18 months we flew to
Brisbane every 3 months for Jaden’s checkups.
In January 1997,
Jaden had to have a Catherter and her next
operation was then scheduled for early
February. Jaden’s sats started to drop and
were now only between 70 – 75%.
Jaden underwent
a Fenestrated Fontan repair. The operation
lasted nearly 10hours. After the operation she
apparently came off by-pass without any
problems, but shortly after the Surgeon
discovered that she was bleeding internally and
could not find the source. The bleeding could
not be stopped so Jaden had to undergo another
open heart procedure in order for the bleeding
to be controlled. This operation took a further
4 hours and once again she had to come off
by-pass. Luckily, there were no further
problems. Dr Pohlner did a complete
cavo-pulmonary connection with the bilateral
SVCs and Right Atrium attached to the
Pulmonary Artery by pulmonary allograft. Jaden’s
right ventricle now pumps into the Aorta. The
ASD was repaired with a fenestrated gortex
patch.
Jaden’s recovery
was very slow. As well as all the drains coming
from most parts of her little body, she had two
extra drains, one under each arm. By the 3rd
day she had pulled both drains out and they had
to be replaced, twice. Again she was ventilated
for a long time and this effected her voice. It
was barely a whisper for months. By the 4th
day Jaden was finally transferred from ICU to
the High Dependency Unit where she spent the
next 2 weeks. Finally, by the 3rd
week Jaden was out of HDU and into a room of her
own. After some very anxious moments and nearly
5 weeks in hospital, Jaden was allowed to go
home. We were home just in time to celebrate her
2nd birthday. Her sats were again
around the mid to high 80’s. (This time without
the aid of additional oxygen). Jaden was now on
Warafin and having blood tests 3 times a week.
They went from three times a week to once a week
to once a fortnight and finally to once a month.
This then was a monthly ritual for the next
couple of years.
In July, 1997,
Jaden was again hospitalised in Brisbane with a
viral infection thought to be causing congestive
heart failure. Jaden underwent numerous blood
tests, ECG’s X-rays, a Thelium Scan and 2
Catherters in three days. During the 1st
Catherter Jaden’s heart stopped and Dr
Radford had to rescusitate her, but the results
finally showed that her heart was functioning
well and after a relatively short period, we
went home. After 2 weeks on antibiotics she was
finally a healthy little girl.
We were still
traveling to Brisbane regularly, as well
having regular checkups at the Cairns Hospital
just to make sure that all was okay.
Jaden is now 11
years old and has had countless numbers of
visits to Brisbane throughout her life. She
still sees Dr Radford in Brisbane, but only once
a year now, to have regular checkups as well as
all the usual tests. The only medication Jaden
takes at the moment is Asprin. She also sees
her Paediatrician in Cairns once a month for
regular checkups. Her Left Ventricle is
doing the work of both ventricles and her sats
are around the mid to high 80’s. This
effects her colour at times, especially when the
weather is cool. She will sometimes look “blue”.
Her liver is slightly enlarged, but apparently
still within a reasonable size.
To look at Jaden
she is a beautiful and healthy looking girl. She
tries to lead a “normal” life and is doing well
in school. She cannot play a lot of physical
sport as she literally “runs out of puff” and
her breathing can become quite laboured at
times. Her physical strength is not that of a
child her age with no disabilities, but this
does not and has not stopped Jaden from enjoying
life. She will try different sports and
is presently enrolled in Rhee Tae Kwon Do. (A
non-contact sport). Because her younger brother
plays a lot of sport and is very active, Jaden
wants to be like him, but she knows she has
limitations and will not push any boundaries,
yet. She has some wonderful friends that
understand (to the best of their ability) her
condition and do not push her in any way. Her
teachers over the years have been fantastic and
keep their eye on her.
We have not long
returned home from Jaden’s Brisbane trip for
2006 and her report from the Cardiologist read
- “heart sounds normal and the liver was
palpable.” Her echocardiogram - “showed a
satisfactory Fontan circuit which was free of
thrombus. Ventricular function was good.
Atrioventricular valve regurgitation as noted
previously and fenestration in the Fontan baffle
also as known previously”. Her chest X-ray -
“showed a normal heart size and satisfactory
lung fields”. Her ECG - “showed sinus rhythm,
right axis deviation and satisfactory QRS
complexes”. The Cardiologist’s opinion -“she
continues to do well and I am happy with the
current situation”.
Jaden’s next
trip is scheduled for May 2007.
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Postscript: When
things were bad, and Jaden was going through
tough times, I did not and could not open up to
anyone. I was only 6weeks pregnant with Jaden
(my first child) when I lost my mother and felt
that I then had no-one to turn to
unconditionally. I would attend the heart
morning teas in my area and listen to other
mothers’ stories and feel where they were coming
from, but I could not tell my story. People were
telling me to look up internet sites and read
about HLHS, but in the end this was totally
disheartening. HLHS, at the time, was not common
in Australia and there were very few cases with
happy endings, to read about. The overseas
websites were even more disheartening as a very
small percentage of the children diagnosed with
this condition had actually survived or if they
did their survival age was not very old.
Overseas were opting for transplants ahead of
any other treatments. So, I stopped reading
other people’s stories about HLHS and tried to
be positive about our own situation, telling
myself that all children are different and
handle situations differently. This, and
the fact that Jaden was so strong willed (and
still is) was what helped me to cope. When Jaden
was in Hospital undergoing her Fontan procedure
I met another Mother (Donna) from Brisbane whose
little boy (Lachlan, also Jaden’s age) was
having the same procedure at the same time. He
has a HRHS and it was meeting Donna that turned
things around for me. Here was someone finally
that had a child that was experiencing a similar
heart condition and we found we could talk to
each other knowing that the other knew exactly
what we were on about. We formed a strong
friendship and we still keep in touch today.
Vivienne Dixon
30.5.06
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