H e a r

Hearts of Hope
Newsletter of HoH Australia – April 2007
Hearts of Hope (HoH) Australia is
a national non-profit organisation
that is incorporated under the
Corporations Act 2001. We have
been endorsed by the Australian
Taxation Office as an Income Tax
Exempt Charity with Deductible
Gift Recipient status.
We offer non-medical support to
all families with a child born with
complex heart conditions that
cannot be cured through medical
intervention. This includes, but is
not limited to conditions such as
HLHS and other single ventricle
anomalies.
The organisation was first setup in
2002 by a group of families with
HLHS children. For two years we
operated as the Australian HLHS
Information Network before we
decided to formalise our group so
we could provide better support for
families.
Our primary goal is to ensure that
every child born in Australia with a
complex congenital heart condition
receives the best possible medical
care to control their diseases. We
do this by:
We were registered as a Company
Limited by Guarantee in August
2004 and are self-funded through
donations, members‟ subscriptions
and fundraising activities. Our
programmes are run by volunteers
and coordinated by the HoH
Executive Committee.
Kellin (Qld)
Providing information and nonmedical support to carers and
parents so they can make
informed decisions and be able
to advocate for their children;
Supporting medical research
and funding the purchase of
equipment that improves
survival rates and the quality of
life of sufferers of complex
congenital heart disease;
Volume 2 Issue 1
Jessica (NSW)
What‟s Inside…
About Hearts of Hope
News and Information
Members Stories
 Kellin at Home
 Jessica‟s Story
 Taylor‟s Update
Heart Matters
Members Gallery
Meet the Directors
Perspective
Support and Resources
Memorial Page
2
2
5
14
17
7
9
12
13
16
18
Giving feedback to the medical
community so that they have a
broader understanding of the
needs of children and families
affected by congenital heart
disease; and
Raising awareness of complex
congenital heart disease in the
broader community.
Taylor (NSW)
Taylor (NSW)
Hearts of Hope Australia Limited (ABN 70 110 635 517)
About Hearts of Hope Australia
Hearts of Hope Australia Limited
(ABN 70 110 635 517)
39 Crystal Downs Drive
Blackmans Bay TAS 7052
Phone:
Email:
Website:
(03) 6229-8169
contact.us@heart-of-hope.org
www.hearts-of-hope.org (Support Site)
www.hearts-of-hope.com (Family Stories)
HoH Family Contacts
Several HoH members have volunteered to be available
to families for support. The role of our family contacts is
to support others that have children with complex
congenital heart disease. They do this by sharing their
experiences and providing information and resources
that will help other parents make the best decisions for
their children.
Family Contacts
Hearts of Hope Australia was registered as a Company
Limited by Guarantee in August 2004. We are a nonprofit organisation governed by a Board of Directors and
an Executive Committee comprised of representatives
elected by the HoH Membership. Whilst the Board has
overall responsibility for the operation of the company,
the day to day management of HoH, including the
development and implementation of policies and
programmes, has been delegated to the Committee.
NSW
Annmarie Fisher
Patricia Cull
Brett & Serena Manwaring
(02) 4267 2457
(02) 4648 2592
(02) 9349 5775
NT
Trudy Court
Deanne Jewell
(08) 8988 5032
(08) 8985 3394
QLD
Neville & Andrea Hyde
(07) 5569 2669
SA
Tony and Natalie Jones
Kerrie Goodfellow
Colin & Allison Mills
(08) 8262 1470
(08) 8522 7740
(08) 8389-6828
HoH Corporate Governance
TAS
Csaba & Anne Óvári
(03) 6229 8169
Directors:
VIC
Leanne Amarant
Jason & Kelly Carter
Stewart & Simone Downs
Lynette McCoullough
(03) 5358 2945
(03) 9395 8789
(03) 9758 1489
(03) 9333 1586
WA
Debbie Rennie
Joanne & Peter Crisp
(08) 9537 7568
(08) 9361 1314
Csaba Óvári
Brian Garcia
Joanne Crisp
Ron Galea
Executive Committee:
Chairman:
Public Officer NSW:
Public Officer QLD:
Public Officer SA:
Public Officer TAS:
Public Officer VIC:
Public Officer WA:
Treasurer:
Csaba Óvári
Patricia Cull
Neville Hyde
Tony Jones
Csaba Óvári
Leanne Amarant
Brian Garcia
Joanne Crisp
Other HoH Office Holders:
Fundraising Coordinators:
Membership Secretary:
Newsletter Editor:
Publicity Officer:
Joanne Crisp
Csaba Óvári
Deb Rennie
Andrea Hyde
Monique Garcia
Fundraising
Hearts of Hope Australia now has approval in all States
and Territories to engage in fundraising activities. We
are a health promotion charity and have been endorsed
as a Deductible Gift Recipient by the ATO. As such, all
donations over $2.00 are tax deductible.
Our Web Sites
Hearts of Hope Australia maintains two web sites:
Information about our organisation and about CHDs,
including links to many reputable medical sites, can
be found at: www.hearts-of-hope.org
Many families have chosen to share their
experiences with others via Deb Rennie‟s web site,
www.hearts-of-hope.com, where you will find
stories from our members and other families that
have children with congenital heart diseases.
Note: The information on these sites does not necessarily reflect
the views of HoH Australia and links to external sites do not imply
our endorsement of the content of those sites.
Hearts of Hope Australia
Our Family Contacts cannot provide medical advice as
they are not doctors. Furthermore, the severity of CHDs
and the outcomes for children with these conditions
varies considerably. If you need any information or
would like to speak with someone, please don‟t hesitate
to call any of the parents listed above.
News and Info…
Welcome to the second issue of the HoH Newsletter. So
much has happened since the first newsletter was
published more than a year ago that it has been
impossible for me to produce additional issues of this
publication. The great news on this front is that Nev and
Andrea Hyde have volunteered to take on the role of
Newsletter Editor and this will see the HoH Newsletter
being published on a regular basis. My sincere thanks
to Nev and Andrea.
Most of my time, since the last issue, has been spent on
gaining approvals to engage in fundraising activities.
This has been a bit of a battle as applications had to be
submitted to all States, each of which have varying
requirements. Related to this task was the need to
review governance issues and several amendments to
the HoH Constitution were made in order to allow for the
day to day management of the Company to be passed
to elected Executive Members.
Since adopting the revised Constitution on 12 June
2006, the Executive Committee has been busy
developing policies and procedures to ensure that
HoH‟s legal obligations in respect of fundraising are
Page 2 of 20
About Hearts of Hope Australia
met. There are many issues surrounding collecting
donations from the public and for this reason, an
information pack has been drafted to assist anyone
wishing to raise money for HoH. This document
including a „Fundraising Proposal‟ pro-forma is available
by downloading it from the HoH website or by request
from one of the Fundraising Coordinators. Additionally,
a sub-committee has been established to assess
fundraising proposals and to advise volunteers engaged
in these activities.
If you have any comments about this newsletter or
would like to contribute to future issues, please send
your submissions to the editor@hearts-of-hope.org
or to the HoH postal address above. We are more than
happy to publish letters, members‟ stories and photos,
book reviews and other articles that may be of help to
families and children with complex congenital heart
conditions.
Csaba Óvári (Director HoH)
While on the topic of fundraising, I would like to thank all
our Members that have contributed their time towards
raising funds for Hearts of Hope Australia over the last
twelve months. Thanks to your efforts, we have
sufficient funds to start implementing some of the
programmes that will make a huge difference to the
lives of families affected by complex congenital heart
disease.
More specifically, the programmes the Executive
Committee have looked to fund include:
 A donation to the Australian Children‟s Heart Research
Centre in support of research into treatment of complex
heart conditions;
 Provision of Coaguchek instruments to facilitate home
monitoring of INR of post-fontan children; and
 Distribution of „hospital / travel packs‟ to families that are
required to travel interstate to get medical treatment for
their children.
I would also like to thank the following individuals and
organisations / companies that have assisted us over
the last fiscal year:
 Carlingford Bowling, Sports & Recreation Club
(NSW) not only for their substantial grant to HoH but
also their offer to assist with further fundraising activities
including a „quiz night‟ to be held in 2007.
 Ian Truscott and Sandy Hatherly (RSM Bird
Cameron) for their continuing support of the
organisation by way of providing financial advice and
services and for covering the cost of auditing services.
 Prof Dan Penny (RCH, Melbourne) for his contribution
to the Health Matters section of this newsletter.
 Ramsey Health Care (WA) for their generous donation.
 Rosary School (SA) for conducting a „Casual Clothes
Day‟ on behalf of Hearts of Hope Australia.
 St Gabriel‟s School (SA) who also held a „Casual
Clothes Day‟ and donated the proceeds to HoH.
 Wip Print and HISCO for the production and funding of
the first HoH Newsletter.
On a personal note… Many of the children born in 2001
and 2002 are now approaching their Fontan surgery.
Firstly, I would like to say my thoughts are with all the
mums and dads and I sincerely hope everything goes
well with what hopefully will be the last major procedure
these kids will need for a long while. We too will be off
to the RCH, early in 2007, for Joe‟s Fontan operation.
With everything else that is going on in our household
(Christmas, Birthdays etc) at this time, it may be a little
harder to contact me but I will respond to all enquiries
as time allows.
Adrian & Estelle Truscott
Beatrice Truscott
Philip & Nicole Truscott
Natalie & Tony Jones
Mark Stevenson
Leanndra Lewis
Ron Galea
Ben & Veronica Sneesby
Karen Jill
Jenny & Stephen Cox
Josephine Cheah
Kristy Maddick
Lorna Falzon
Sue O‟Donoghue
Kylie Dumbleton
Anna Matuszek
Neville & Andrea Hyde
Cheryl Alexander
Shiona Jinks
Mary Thoreson
Rebekah Ovari
Mark and Megan
Johnson-Smith
Chantele Hoey
Kate Boulton
Jane Krizek
Annette Boyer
Leanne & Jeff Smith
AnneMaree & Bernard
Higgins
Judith & Thomas Lillis
Narelle & Darren Morey
Leah & Steven Elston
Kathy & Peter Morrison
Effie Heldzingen
Owen Svanberg
Stephen & Lucy
Paulovics
We would like to encourage everyone that has the time,
talents or contacts to help Hearts of Hope Australia raise
the funds needed to achieve our aims.
We appreciate any assistance we can get with this but it
is important to remember that the organisation can only
accept funds from events that have been approved by
the HoH Fundraising Sub-committee.
Continues on next page….
Hearts of Hope Australia
Page 3 of 20
About Hearts of Hope Australia
Some recent fundraising activities of HoH are outlined
below. If you can help with similar fundraisers or have
ideas of your own, please don‟t hesitate to contact one
of the Fundraising Co-ordinators or HoH Public Officers
in your State.
Cadbury Chocolates
Several Members have participated in
Cadbury Fundraising Chocolate sales.
These fundraisers are relatively
straight-forward with each dollar being
paid for the merchandise returning a
dollar in profit for HoH. Recent sales in WA and SA have
raised close to $1000. More information about how
chocolate fundraisers work, including what products are
available can be found at the Cadbury Website:
www.fundraising.com.au/fundraising/
Jan
08
13
Chloe Downs
Nikki McKinnon
2001
2003
Feb
02
07
28
Keanu Harbord
Sarah Wingrave
Richie Jimenez
2004
1998
Mar
03
18
18
Luc Harvey
Xander Trippler
Krish Bhojwani
2006
2004
2005
Apr
03
05
11
16
16
24
Jayden Alexander
Lily Fisher
Noah Lindsay
Jordan ZhaoLin
Kellin Hyde
Cameron Craig
1998
2001
2004
2005
2005
2003
May
26
26
Amelia Manwaring
Mary Thoreson
2005
1986
Jun
05
08
14
21
24
25
27
Jasmine Lewis
Westley Harrison
Summer Lloyd
Cameron Carter
Jakob Fussell
Jeni Sorensen
Finn Dumbleton
2005
2004
2005
2005
2004
1985
2000
Jul
04
18
24
28
Makenzie Misenhelter
Phelicity Sneesby
Bradley White
Caleb Krizek
2004
2002
2002
2003
Aug
05
13
25
Aurora Elfering
Michael Mills
Chloe Ann Clayton
2004
1991
2004
Sep
13
22
24
Charla Maddick
Taylor Colvin
Thomas Goodfellow
2005
2000
1999
Oct
03
04
10
20
21
24
28
31
James Crisp
Joseph Óvári
Casey Court
Nathan Smith
Jack Crowley
Isaac Sheriff
Sam Jewell
Abby Johnson
2000
2001
2001
1993
2003
2005
2000
2006
Nov
03
07
08
09
13
14
Nathan Garcia
Chanice Cull
Grace Blackler
Joshua Jones
Haydan Olney
Noah Amarant
2002
2002
1999
2004
2002
2001
Dec
06
10
22
Jessica Canterbury -Titmus
Sophie Horne
Brenton McCoullough
2004
1998
1991
Feral pigs raise funds for
Hearts of Hope Australia
Sorry about the headline…but I couldn‟t resist. This very
unique and successful event was held at a 40th birthday
celebration in the NT. Feral pigs were auctioned and
entered in a race. Proceeds from the auction and most
of the race prize money were donated to HoH. The
event, which raised over $3000, was co-ordinated by
Trudy and Mick Court. Well done Trudy and Mick and a
big thank you to our supporters in the Northern Territory.
Sausage Sizzle
Tony and Natalie Jones (SA) arranged a sausage sizzle
last year. They did a terrific job of getting the support of
several local business by way of having goods and
services donated for the event which raised over $300.
Casual Clothes Days
Tony and Natalie also enlisted the support
of 2 local schools that held casual clothes
days on behalf of Hearts of Hope Australia.
The Rosary and St Gabriel‟s schools raised
more than $650 for HoH through gold coin
donations from students.
Hearts of Hope Australia
Page 4 of 20
Kellin at Home
Nev and Andrea Hyde shared the beginning their son‟s
„HLHS journey‟ in the last issue of this newsletter. Kellin
is now at home and doing well. The following is an
extract from his parents‟ journal which can be found at:
http://www.hearts-of-hope.com/kellin/
17th August 2005... 4.30 Kellin had his final
appointment with his cardiologist, Prof Penny yesterday.
After another echo he was given the all clear to leave
Melbourne and return home. After 4 months for Kellin
and 5 1/2 for his mum and dad we all get to fly home
tomorrow. Kellin will now have further check-ups in
Brisbane, who are also used to handling HLHS kids.
21st August 2005...11pm Kellin has settled in at home
after his first weekend back in Queensland. He was
greeted with beautiful weather at 25 deg and
enjoyed his first play out in the warm sunshine. After a
big week last week that started with a full page article in
the Gold Coast Bulletin and approval to go home on
Tuesday, the flight home was no problem for Kellin who
was happy just to look around for most of it. A limo ride,
supplied by Channel 9, from Brisbane to the Gold Coast
was a great way to finish a long 5 1/2 months. Then on
Friday morning our little star made his second
appearance on TV with his own story on the Today
show followed by a lengthy piece on the local news that
evening. Kellin had a check up on Friday with Dr Justo
at the Prince Charles Hosp and being happy with his
examination has scheduled his next appointment
(provided Kellin doesn't need to have an MRI scan
beforehand) in 2 months.
To have Kellin home with us is unbelievable and it took
so many talented people to help this happen. We would
like to give our deepest heartfelt thanks to Dr Yves and
the surgical team, Prof Penny and the Cardiology Dept,
all the special Nurses who bought Kellin back to health
when he was at his worst in ICU, Brett and Cathy
(Kellin‟s Doctors on the ward), all the caring Nurses of
7west who taught us how to look after him, all the
families we have shared time with in hospital, all the
Hearts of Hope families with their encouraging support
and all the love we received from family and friends.
Hearts of Hope Australia
16th October 2005… Kellin turned 6 months old today.
Hooray for his 1/2 birthday. He has settled into home life
very well over the last two months with the only concern
being a slight infection in the top of his scar where a
stitch resurfaced and became infected. Our GP
managed to pull out about 30mm of thread before
deciding to cut it. After a course of antibiotics the
infection subsided and hasn't been a concern since. The
only other issue we are keeping an eye on is his
tendency to become a little clammy at times but we are
hoping it is heat related and not him working hard.
Developmentally he has
gone from strength to
strength and after
appointments with the
Maternal Health Nurse
and his Paediatrician, we
now know Kellin is up to
where he should be at
this age with most of his
stats, weight, length etc being around the 30th
percentile mark. The only thing suggested was that he
was a little behind in the strength needed for rolling and
holding himself up but just yesterday he realised he
could roll and then continued with it all day long. He
has had a relatively smooth transition into eating solids
and at this stage doesn't appear to be fussy when it
comes to his food, although with two front bottom teeth
cutting through last
week he has been a
little off drinking.
Kellin is having a lot of
fun now spending
more time with his
relatives, as well as
having a special
visitor, Jacob Fussell
(HLHS 16 months) from NZ. A big smile is never too far
away for Kellin, made even sweeter by the first sounds
of laughter earlier in the week.
First Christmas...
We thought since Kellin
was only eight months
old, and a little young for
the „pressie thing‟, that
this Christmas would be
more for us celebrating
and thanking God for the
joy of having our little
man but how wrong we were. Kellin was right into the
day, ripping open the wrapping paper, trying to eat the
cards then leaning over to grab the next present in line,
his little hands and toes constantly wriggling as they do
when he gets excited. Over the Christmas break Kel
was able to play a lot with all of his cousins on both
sides of the family and this seemed to help with his
speech development as we now have a little chatterbox
on our hands.
Page 5 of 20
Kellin at Home
16th Jan 2006… Kellin turned 9 months old today and
what a busy time the last 3 months have been. In early
November, Danielle, one of Kellin‟s favourite Nurses,
came up from Melbourne to the Gold Coast to visit and
it was great to catch up outside of the hospital
environment.
To escape the record high temps of this year‟s summer,
Kellin has been spending a lot of time in water. Once in,
there is no stopping
him as he
thrashes around
continuously. He
can get a bit
disappointed when
we decide that his
time is up (usually
depends on the
shade of blue Kel is
turning).
On the medical side, over the last three months, Dr
Justo has ceased Kellin‟s lasix (a diuretic) and
increased his dose of captopril and aspirin, hopefully
only because Kellin has grown. These are the only
drugs Kellin has to take for now as we wait for a date
soon for Kellin to have an MRI scan to get a better
indication of how well his heart is functioning. He has to
see an Occupational Therapist as the only thing Kel
needs to catch up on physically is stomach strength for
crawling and sitting up but he is ahead with things such
as eye/hand coordination. Upon his Speech Therapist‟s
advice, Kel is now eating chunkier food as he
had a problem or two swallowing anything not
pureed, often leading to a vomit, probably due to having
vocal cord palsy after the Norwood.
Overall Kellin has had a stable 2006 and is now 19
months old and enjoying a relatively normal childhood,
loving trips to the beach and seems at this stage to
keep up with other children when playing with them. The
doctors were happy with the MRI results and now Kellin
only has check-ups every six months.
Hearts of Hope Australia - Mission
To provide non-medical support, information
and other assistance directly to families in order
to help relieve the suffering and distress of
 children born with complex heart disease and
 their families, including those parents that have
lost their children to Congenital Heart Disease.
To raise community awareness of complex
Congenital Heart Disease.
 Our goal is to create a broader understanding of
the challenges faced by families and their children
who are affected by these conditions.
To support the Medical Community by:
 raising funds for the purchase of medical
equipment and for research programmes, and
 providing feedback and information about our
activities to hospitals, Doctors and other medical
professionals.
To work co-operatively with other organisations
that share our goals.
To achieve our aims, we raise funds:
 to assist families living away from home for extended
periods whilst their children are hospitalised,
 for the purchase of goods/services to increase the
comfort of hospitalised children and their families,
 for events where the children and their families can
enjoy social activities,
 to disseminate information about Congenital Heart
Diseases and our activities,
 to support Paediatric Cardiac Research Programmes in
Australia that lead to higher survival rates and a better
quality of life for children born with heart disease, and
 for the purchase of medical equipment to improve the
management of these conditions.
Hearts of Hope Australia would like to encourage those involved in caring for children
with complex Congenital Heart Disease and/or supporting their families to become
members of our group. Membership is open to:
families of children with HLHS and other complex congenital heart disease,
parents who have lost children to CHDs,
health care workers, social workers and anyone who is interested in helping us achieve our aims.
If you would like to join Hearts of Hope Australia, please complete the enclosed Membership Application then
forward it and payment (if you are subscribing) to the membership Secretary. Alternatively, you can join HoH by
completing the online application at: www.hearts-of-hope.org/member/invite.htm where you can also find more
details about our membership options and the services we provide.
Deb Rennie is the HoH Membership Secretary and is also available to answer any questions you may have about
joining Hearts of Hope Australia. Deb can be contacted on (08) 9537-7568.
Hearts of Hope Australia
Page 6 of 20
Heart Matters
Heart Matters‟ is a regular section in the HoH
newsletter that focuses on the medical aspects of
questions raised and discussed by our members.
Information in this section has been provided by
medical professionals or health organisations but it
should be remembered that it is of a general nature
and any questions specific to your child‟s health
should be discussed with your own doctors.
Thanks to Professor Dan Penny from Royal Childrens Hospital ,
Melbourne, for taking time to answer some common questions
asked by parents of children with HLHS.
About HLHS and its treatment
How common are conditions such as HLHS and what
other complex Congenital Heart Diseases are treated at
the RCH?
Congenital heart disease occurs in about 8 out of every
1000 births. About half of these can be considered „major‟.
In Australia, congenital heart disease is the most common
type of birth defect and by far, the most common type of
fatal birth defect. At the Royal Children‟s Hospital we care
for all types of heart disease in children, ranging from minor
defects for which no treatment is necessary to major
conditions which require complex operations such as the
Norwood operation and cardiac transplantation.
How many cases of HLHS are referred to the RCH every
year and what percentage of these children are
successfully palliated with the Norwood/BCPS
surgeries?
Over the past few years approximately 20 children are
referred to us annually and of these, approximately 80-90%
are treated successfully.
There have been great advances in the treatment for
HLHS over the last decade. What improvements to the
procedures have been most important in increasing
survival rates and improving the quality of life of
survivors?
We have learned a lot over the past decade on the optimal
methods to care for children with HLHS in the preoperative
and postoperative period, which no doubt, has improved
survival rates, not only for children with HLHS, but also
those with other forms of complex heart disease.
Improvements in the antenatal detection rates have also
improved our outcomes, so that we now see fewer babies
coming to us, having collapsed because the diagnosis
hasn‟t been made. Improvements in surgical technique
have been dramatic, with the development of the Sano
modification and better intraoperative protection of the
brain.
What other advances are we likely to see in the future
to help these children?
A number of institutions have been developing techniques
to perform less-invasive types of initial palliation, involving
transcatheter techniques or „hybrid‟ approaches, which
combine transcatheter techniques with simpler surgery. It is
likely that we will move towards these approaches in the
future, although as yet, worldwide experience with these
techniques is still quite small.
Hearts of Hope Australia
The RCH has a practise of keeping babies hospitalised
until after the second stage surgery. Can you explain
why this is so important and what makes a postNorwood patient so much more fragile than after the
BCPS?
We were concerned that a number of babies after Norwood
palliation deteriorated suddenly before their „second stage‟
surgery and for this reason have been keen to keep them
under close surveillance between the time of their first and
second operations. It is possible that these deteriorations
were related to an upset in the precarious balance between
their pulmonary and systemic blood flows. Having said that,
it is likely that these episodes do not occur as frequently in
children after the Sano modification.
Heart transplant seems to be seen as a last resort for
the treatment of HLHS. If there were enough donor
hearts available, would transplants be a better
treatment option for HLHS or are there drawbacks that
generally make the reconstructive surgeries a better
alternative?
Its difficult to say and there remains some controversy in
the literature about whether patients who undergo neonatal
transplantation have better outcomes than those who
undergo a Norwood-type approach.
Are you aware of any patients that initially had
reconstructive surgery but subsequently needed a
heart transplant? Were these transplants successful
and were any of these undertaken post-fontan?
Yes, it is important to emphasise that when we are
embarking on a Norwood-Fontan program for patients with
HLHS we are not closing the door on the potential for
transplantation in the future. I have seen patients, both after
Norwood surgery and after Fontan operations who have
undergone cardiac transplantation with successful
outcomes.
What are the indicators that a child needs the Fontan
surgery and what factors are considered to determine if
that child is a suitable candidate for the surgery?
A number of years ago, most units planned to perform a
Fontan-type operation on their patients at some arbitrary
age (and the exact age differed between units). However
currently many units, including ours, now prefer to defer the
Fontan operation until the patient becomes symptomatic
(usually because of a reduced O2 saturation). Before
undertaking the operation we need to examine a number of
factors to ensure that the patient is suitable, in particular,
with reference to their pulmonary circulation. As a result, we
would currently recommend cardiac catheterisation in all of
our patients, before referring them for this type of surgery.
Why does RCH use the extra-cardiac conduit for the
Fontan?
Many units have now taken up this approach. As it involves
less surgery within the heart, the cardiopulmonary bypass
strategy which the perfusionist uses to support the
circulation during the operation may be simpler.
Furthermore, it avoids suture lines within the atrium, which
we know may be a risk factor for arrhythmia in the longer
term.
Continues on next page….
Page 7 of 20
Heart Matters
CHD FACTS
Congenital Heart Disease (CHD) is a malformation or
lesion of the heart that is present at birth.
CHDs are the most common congenital defect. More
than 2000 babies (approx. 1 in 100) are born with
these conditions in Australia each year.
Heart disease in children is common. It is the leading
cause of child death in Australia, accounting for more
than 30 per cent of all deaths and is the most
common reason for admission of Australian children
to intensive care.
There are approximately 40 identifiable birth
anomalies and syndromes that are classified as
CHDs. The 10 most common lesions are:










Ventricular Septal Defect (VSD)
Patent Ductus Arteriosus (PDA)
Atrial Septal Defect (ASD)
Transposition of the Great Vessels (TGA)
Coarctation of the Aorta (CoA)
Hypoplastic Left Heart Syndrome (HLHS)
Anomalies of Pulmonary Valve (PA)
Endocardial Cushion Defects (AV canal)
Tetralogy of Fallot (TOF)
Tricuspid Atresia and Stenosis
There is a wide range in the severity of Congenital
Heart Diseases. In some cases the defect is so mild
that there are no outward symptoms. In other cases,
babies become seriously ill soon after birth and
require immediate medical attention. The symptoms
of some CHDs do not present until later in childhood.
Some complex CHDs require multiple surgeries, a
lifetime of medications and preventative measures to
maintain a working heart. For some people, their only
hope is a heart transplant.
Heart transplants are also an option for
conditions such as HLHS. However, even if
enough small donor hearts were available, the
advantage of having a normal heart after a
single surgery may be outweighed by the long
term concerns including:
 The side effects from the life long need for
anti-rejection medications,
 growth problems, and
 early onset coronary artery disease.
Additionally, low-grade rejection is almost
inevitable so that the average "lifespan" of a
transplanted heart is about ten years. *
Protein Losing Enteropathy can develop in patients
after the Fontan Surgery. What is PLE, how common is
it and how soon after the Fontan is it likely to present?
What options are there if a patient develops PLE after
the Fontan?
This is a difficult, but thankfully a rare problem in
patients after the Fontan operation. There are a
number of treatment options available to us, although
many of these are somewhat anecdotal. What is the
most important part of the treatment strategy is to
ensure that the patient doesn‟t have any mechanical
obstruction in the pulmonary circulation which is
causing the venous pressure to be elevated. If so,
the treatment would be to relieve the obstruction,
either in the cardiac catheter laboratory or at surgery.
Parents that have a child approaching the Fontan
surgery may have concerns about Warfarin therapy.
Why do post Fontan patients need Warfarin (instead of
Aspirin) and what is involved in maintaining a safe
dosage? Are there any alternative medications being
tested or developed that may in the future replace
Warfarin?
We currently place our patients on Warfarin treatment
after the Fontan operation, because we are
concerned about the potential for clot formation.
Some units use aspirin although there are very little
data comparing the two approaches. Some of my
colleagues in this department have been undertaking
a randomised trial comparing the two approaches,
which may help to provide the answer with respect to
the best approach. The main issues with respect to
safety relate to regular monitoring of the INR level
and remembering that many drugs may interfere with
the effects of Warfarin. The monitoring of Warfarin is
undertaken by haematologists for many of our
patients, which may also help to provide more
accurate control.
Members Gallery
The Members Gallery is a regular feature of the HoH
Newsletter where families share precious memories of their
children. The gallery in this issue has a theme of “firsts”...
We hope everybody enjoys these snapshots of the
achievements, fun times and other memorable occasions
these very special kids bring to the lives they touch.
Joseph Óvári
(Tas)
Cures for these heart conditions remain unidentified.
There is an immense need to develop early
intervention strategies to identify and prevent heart
disease in children.
* SOURCE: University of Michigan - Congenital Heart Centre
http://www.med.umich.edu/cvc/mchc/parhyp.htm#transplant
Hearts of Hope Australia
First Haircut
Page 8 of 20
Members Gallery “Firsts”
Cameron Craig
(New Zealand)
1st smile post Fontan
1st hug with sister Abbie
1st day leave from the RMH
Phelicity Sneesby
(NSW)
1st solids
1st walk outside post Fontan
1st outside swing
Joshua Jones
(SA)
1st beach visit
1st bike ride
1st horse ride
Chanice Cull
(NSW)
1st play with a kangaroo
Hearts of Hope Australia
1st time out of the ward
1st zoo visit
Page 9 of 20
Members Gallery “Firsts”
Cameron Carter
(Vic)
Christening
1st trip outside the ward
1st Birthday
Amelia Manwaring
(NSW)
1st Birthday
1st trip to Palm Beach
1st visit at Kellins
Jesicca Canterbury-Titmuss
(NSW)
st
1 band
st
1 fire truck
st
1 Christmas at home with brother, Noah
Abbey Johnson
(Qld)
st
1 day
st
1 bottle feed from Dad
Hearts of Hope Australia
st
1 bath with Mum
Page 10 of 20
Members Gallery “Firsts”
James Crisp
(WA)
1st running race (James in middle)
Krish Bhojwani (Indonesia)
1st ribbon
1st cricket trophy
Sam Jewell (NT)
1st dinner meal
Kellin Hyde (Qld)
1st day of school
Joe Ovari (Tas), James Crisp and Nathan Garcia (WA)
st
1 vegemite sandwich
Haydan (HLHS) & Jordan Olney (NSW)
Get together at Kings Park (Perth)
Hearts of Hope Australia
Page 11 of 20
Meet the Directors
My name is Ron Galea and I am a 48-year-old high
school teacher who was raised in Melbourne but who
has lived in Tasmania on and off for the past 25 years.
In addition to teaching I have been a professional editor
and the Dean of studies at a university college. My wife
Nicola and I have four beautiful girls, the eldest of whom
is 17 and the youngest 3. I became involved with
Hearts of Hope through knowing Csaba and Anne
Ovari; Benjamin, their fourth son, is our godson. After
Joseph Ovari was born we, like all the Ovari‟s friends,
followed his progress avidly.
Ron Galea
Hypoplastic Left Heart Syndrome (HLHS) is a
Congenital Heart Defect where the left side of the heart
has failed to develop properly.
My name is Joanne Crisp and most of our members
would know me as „Mum to James, 6 years old with
HLHS‟. In August 2005 I was appointed a Director of
Hearts of Hope in addition to my existing role as
Treasurer. Never having been involved with any groups
or committees in my past, I‟ve found it an incredible
learning curve and enriching experience. Thanks to
Csaba Ovari‟s guidance and support I‟ve been able to
work my way through the necessary tasks required of
me. I must also give thanks to my husband Pete who
takes care of many banking, postage, printing and
computing tasks for me and without whose support, I
wouldn‟t be able to devote my time to our cause.
In the Hypoplastic Left Heart, there are varying degrees of
malformation but usually the left ventricle (1) is very small
or non-existent. The aortic valve (2) may be narrowed or
closed and the aorta (3) itself may also be very small. The
left atrium (4) is sometimes small and the mitral valve (5)
between the left atrium and left ventricle can also be
narrowed or closed. There may also be a „hole‟ or ASD
between the left and right atria (6).
These defects put extra work on the right side of the heart,
so chambers and blood vessels on this side may be
enlarged or stretched larger than normal.
In addition to my Hearts of Hope work I keep myself
busy with James, his 3 year old brother Timothy
(healthy heart) and our baby girl Heather (healthy
heart).
James has completed his three stage surgical palliation
with his stage 3 Fontan surgery in Melbourne in March
2005. We do find managing his Warfarin therapy tricky
at times but we are getting more confident and
knowledgeable with time. From a medical perspective,
James is very stable, healthy and thriving. He has
required several other non-heart related surgeries and
procedures but he copes very well with these additional
hurdles. He is in year 1 and really loves school life.
Whenever we tell somebody about James‟ heart they
find it hard to believe he has such a serious heart
condition because he appears to be just like any other
child, enjoying his cricket club at the weekends and
swimming lessons during the week. James is an avid
footy fan and has a „kick‟ at every opportunity.
I truly value the opportunity to have been involved with
Hearts of Hope from its inception to what we believe is a
wonderful support network for families of children living
with complex congenital heart disease and also for
those that have lost their battle with such defects.
Through Hearts of Hope I have made and continue to
make many friendships I will treasure forever.
Warmest wishes…. Jo Crisp
Hearts of Hope Australia
ASD:
Atrial Septum Defect
RA:
Right Atrium
LA:
Left Atrium
RV:
Right Ventricle
LV:
Left Ventricle
PA:
Pulmonary Artery
A:
Aorta
HLHS is the fifth most common Congenital Heart Defect
that occurs approximately once in every 5000 live births. It
is a severe condition and without treatment it is fatal.
Nothing could be done for these babies before the 1980s.
Fortunately, a series of surgeries was developed to
palliate HLHS and as a result of the dedication of health
professionals, there are hundreds of these children
worldwide bringing joy to the lives they touch.
Approximately 40-50 babies are born with this condition in
Australia every year.
Page 12 of 20
Perspective
Learning that your baby has a serious medical condition is devastating for parents. We all want the best for our
children and hope they will have a bright and happy future. For children with HLHS the future is without a doubt
less certain.
As babies, these children face complex and high-risk surgeries that most adults never have to go through. The
anguish and stress at this time can be overwhelming for parents. Despite this, children born with HLHS bring hope
and a new perspective on life to their families. Every milestone these children reach: the first smile, the first
tentative steps or the first words, are especially precious for the families who know how hard their children have
had to fight for their survival.
Coming to terms with HLHS and learning how to deal with the changes it brings to our lives is a very personal
journey. Family, friends and the people who have 'been there' can all help with the tough times ahead.
Kids can be Funny… Ask Haydan
Haydan is 3 and has HLHS. These are a few of his funny times:
One day he came racing up to me and asked, "Mum please take it off", I
asked, “What?”, he said, “the yucky", - it was 2 freckles he has on his arm.
Another day Haydan let out a fake cry and said Jordan (his twin) had hurt
him (after they had a little scuff over a toy). I said, “Poor thing, show me
where it hurts”, he lifted his shirt and pointed to his chest scar.
Sometimes when Haydan really wants what his brother has, he'll put on a
big show and say ”Look Jordan, a big spider on the roof", Jordan looks and
then Haydan takes the toy.
One of his latest things is yelling "Ouch, Bubba bit me". Kyle has no teeth!
This is a small section of Haydan‟s report from Childcare which he attends
once a week:
H is for HYPER… he has so much energy throughout the day
A is for AFFECTIONATE... he loves cuddles
Y is for Yummy… he cooks up a storm in home corner
D is for DARING… he has no fear when he climbs on the equipment outside
A is for ACTIVE… he enjoys moving and jumping around
N is for NUTCASE… he's a cheeky bundle of madness
Not quite what one would expect for our HLHS child.
As can their Parents…. Jason Carter writes
- About Cameron‟s „Trachy‟
He's never pulled the trachy out, luckily, but one of his favourite hobbies is pulling
his Swedish nose (filter) off. It's quite funny when he does it front of people who
don't know it's just the filter - they freak out. Must be my slightly sick sense of
humour. On the plane on the way over to Perth we had to use the suction unit
(which sounds like a small air compressor). I told the other passengers, who
turned around for a look, that he deflates so I have to pump him back up.…
- About “hospital life‟
Milrinone, Heparin and Captopril are your friend (or your child's friend).
Hospitals (and Doctors) work in their own time zone. 5pm to them is not
the same as 5pm to us.
intubate and extubate are a long way to say "tube in" and "tube out".
Nurses joking and laughing with each other when your child is sick annoys you
less and less over time (in fact you realise it's important when you're working with
sick kids).
Hearts of Hope Australia
Page 13 of 20
Jessica’a Story
The following article describes the beginning of a very long
journey for Jessica (and her family) who was born on
December 6, 2004. Jessica had many up and downs before
she was discharged from the Royal Children’s Hospital in
June the following year. Jessica’s mum, Elese, started a
journal for Jessica when her HLHS was discovered. The
Journal starts with these words:
“Dearest Jessica, It is with great love and hope that we
write this book for you, so you may know one day how
very precious you were to us from the moment that our
love for each other created you”
Elese‟s journal and more information about this
special little girl and her family can be found at
http://families.hearts-of-hope.org/jessica/
Jessica's life began early in 2004. We were ecstatic to
discover that we were pregnant with our second child
and it made us ponder yet again the miracle of life.
Pondering, when there is a toddler running around is
always short lived however and we continued to lead
busy, interesting lives. We were reminded of our new
arrival amidst the hustle and bustle as my belly grew
and that amazing feeling gifted only to mums of a baby
moving inside began. Few of the unfounded fears I had
in my first pregnancy (very common I'm told in first
pregnancies) even crossed my mind. I was reluctantly
back at work full time and Paul was home full time with
Noah for this year.
Life whistled along until Tuesday 25th July, a day that
began as many others but ended in a way that would
change our lives forever. Paul and Noah met me for our
19 week ultrasound with the biggest thing on our minds
being our indecision about whether to ask the sex of our
baby or not. This event became surreal and dreamlike
in retrospect but I remember thinking how long the
ultrasound was taking and that it was getting near
Noah's dinnertime. I remember saying to Paul after we
were told we were pregnant with a little girl and we
smiled at each other "Noah has been so great- take him
out and play with some toys" and the ultrasound
technician saying "No one is going anywhere. I cannot
see the left side of your baby‟s heart."
Our ultrasound technician, pregnant herself became
weepy and said she had phoned and made an
appointment for a confirmation with our doctor for
Thursday. Next thing I was driving home and talking to
Jessica (this name had been on our list of girls names
and with the news it somehow seemed right to start
talking to her in this way). Needless to say we were
shell-shocked. As is our nature in the modern world I
stumbled into the study and entered the words Heart
Defects and from the huge list I saw one condition with
the word "Left" in it-based on the technicians comment.
The condition was Hypoplastic Left Heart Syndrome. I
read the first 5 lines, my head spun I jotted down a few
words, told Paul I could not do this tonight and that I had
to go to bed! The next 42 hours till we saw our doctor
was tormenting. We walked around in a half daze,
hoping it had all been a mistake, that the ultrasound
Hearts of Hope Australia
technician had got it wrong, after all she wasn't a doctor.
Why had she told us this?
Thursday 27th July our appointment with our doctor and
my Mum's 70th Birthday. Within a few minutes our
doctor confirmed our baby‟s condition as Hypoplastic
Left Heart Syndrome. As soon as he said the words
Paul and I looked at each other knowingly-it was the
condition I had selected from the long list on the internet
and the tears started. Our Doctor said it was imperative
to perform an amniocentesis (which petrified me). He
said that this was the most serious congenital heart
disease and that there would be no 'normal' life for this
child, he then broached the "t" word and we fell apart.
He explained the states rules and regulations regarding
the "t" option and said he would need to hear from us no
later than 12 noon Monday (4 days) for our decision.
He asked if we would like a second opinion and we said
yes we would like all the information we could get. He
immediately called a specialist at Prince of Wales in
Sydney who kindly agreed to see us that same
afternoon. The assisting nurse then handed us an
image of Jessica and said that we should go and sit at
the beach together and keep the photo in our wallet for
a few weeks!!! I always remember feeling stunned at
her assumption.
That afternoon we met with Dr Steven Cooper who
confirmed our Doctor‟s findings and kindly presented us
with the information re surgery and answered all of our
questions honestly and sensitively. Steven informed us
about the surgeons at the Royal Children's Hospital in
Melbourne and kindly made the necessary contacts for
us. As a family we shut down that night, we told only our
parents on the Thursday night-they did not offer an
opinion, only support and a listening ear and then we
took the phone off the hook. We had been asked to
consider things by our doctors that were at the core of
our lives - the impact on our marriage, the impact on our
son, our child not having a normal life, us not having a
normal life...all of these statements rushed through our
head at a million miles an hour. In addition were the
"options" we were presented with.. the "t" word,
compassionate care and surgery.
Every way we looked at it we felt guilt. We were fixated
on the thought that whatever option we choose we
would be subjecting our unborn child to pain and
suffering. Even now I cannot put into words the
discussions we had...they were very much a part of the
surreal situation we had found ourselves in accentuated
by the pressure of "time".
There are two things I will never forget happening over
this weekend ...on the Saturday afternoon Paul returned
from a walk with Noah in the pram having been caught
in the rain, he stood on the front doorstep dripping and
said to me "Who wants a normal life anyway? Normal
could get boring!" I tell you what, I fell in love with that
amazing man all over again in that split second, as I will
testify over and over again in Jessica's story there is no
man on the face of this earth I would have wanted to be
Page 14 of 20
Jessica’a Story
with through it all than Paul. Thus the statement of the
doctors re the effect on our marriage drifted away - our
marriage was strong enough to sustain whatever was
thrown at us! and as for the effect on Noah we looked at
this in two ways, firstly how would we ever explain to
him that we chose not to have his sister because of the
"effect" it may have on him? and secondly why did the
"effect" of having Jessica need to be negative? Indeed
Noah would have a different life because of his sister
anyway.
Now I am not one for "signs" but on the Friday we all
went for a walk to the beach and on gazing out to sea a
huge pod of dolphins swam by and we were all
mesmerized by their beauty and by the whole wonder of
nature and creation and it made me think if this baby is
well inside me it is not her time yet - lets give her a
chance at life. Paul and I finally fully revealed our
feelings to each other in a decisive way on the Sunday
afternoon and although scared we felt a huge weight
lifted from us in the unity of our decision to give our
beautiful Jessica the best possible chance at life and to
treasure every moment with her now...not from the birth
but NOW. Immediately we named our baby Jessica and
she became beautifully "present" in our lives and in the
lives of our extended family. We spoke to her and of her
by name many times everyday.
During the months that followed we openly discussed
Jessica's condition with our family and friends and we
received bundles of support. Lots of hugs, cards left on
desks at work, offers of prayers, precious medallions,
the Bishop of Wollongong stopping me at the elevator
at work to bless me, family pledging their
unconditional support of us-it was this outpouring of
love that carried us through the anxious
months. Everyone knew we were having a beautiful
baby girl named Jessica and that we would leave our
home in New South Wales and travel to Melbourne to
give her the very best chance at life.
During this somewhat confusing time we were
surrounded by support from family and friends, but also
from the most amazing workmates in the world.
Needless to say I felt a huge void when I left them all in
early November.
Jessica‟s birth
Comparatively there seemed no voids in our home that
a packing box did not occupy! This was a very
emotional process as when we moved into our home we
had sworn we would never leave - we are blessed to
live in paradise! This was a very difficult time for Noah
and we could literally see his distress as we packed up
his room.
We also began to plan for the practicalities of moving
interstate with the added concerns for our toddler
Noah. We were strongly committed to staying
together as a family-we knew this was the only way
we would get through the challenges that awaited us.
Before we knew it November had arrived, moving
month. The months prior had become increasingly
frenzied as we began to pack up our home and work
out all the things that needed to be done to relocate
the 4 of us to Melbourne. My Aunty and Uncle,
affectionately known as One Pat, Two Pat to our son
Noah had immediately offered to have us live with them
in the weeks before Jessica's birth. We decided to take
them up on this offer, keen to delay hospital living for
Noah at least until we had to. To be honest we were
still very unsure of the accommodation issues until we
arrived. We had one visit to Melbourne for the day in
October to meet with everyone at the Royal Women‟s
Hospital.
Hearts of Hope Australia
On Ecmo in ICU
On the 19th November we got into the car together
(even though it was suggested I fly being so heavily
pregnant at 36 weeks) for what would be another step in
the journey of our lives. We arrived at Pat & Pats place
on the 20th November to family and this was a huge
comfort to us. Over the next few weeks we had several
appointments at the RWH and the RCH.
Continues on next page….
Page 15 of 20
Jessica’a Story
I will never forget our first meeting with Jessica's
surgeon Christian Brizzard (pictured below) and being
mesmerised by his long fingers and thinking "these
hands will touch our daughters heart".
Support and Resources
Heart Kids
ACT
c/- NHF ACT Division
PO Box 220
Deakin West ACT 2600
NSW
26/10J Hilltop Street
Merrylands NSW 2160
Ph (02) 9294 0800
NT
PO Box 848
Palmerston NT 0830
Qld
PO Box 501
Chermside South QLD 4032
SA
155 Hutt Street
Adelaide SA 5000
At an appointment at the RWH in consultation with
Christian it was decided that I would be induced on
the 5th December- there was something bizarre to me
about knowing this.
Vic /Tas
c/o Auxiliary Office, RCH
Flemington Rd
Parkville VIC 3052
Steadily Nana and Pa, Grandma and Pa, Uncle Mark
and our wonderful friend Monica journeyed to
Melbourne to be of support when Jessica arrived.
Added to this was uncle Steven who lives in North
Carlton. How lucky we are to have them.
WA
Two hours ago I was induced so that you will arrive in
time for Dr Christian to perform your Norwood
operation. We cannot wait to see you...but I will miss
forever your beautiful movements inside me. Be
assured that Paul and I felt anything but calm. There
was the distinct feeling that the roar of a hurricane
could be heard over the mountain and we knew we
would need to batten down the hatches for the
greatest roller coaster ride of our lives...we were not
wrong!"
Update:
Jessica is now now two years old. She continues to
thrive on love and she and her brother Noah bring
limitless love into our lives. Jessica has an amazing
smile and a feisty determination. She started walking
at 18 months, is learning a new word every day and
delights in her shoes, clothes and currently refuses to
leave the house without her "hat". It is hard to believe
that this time last year she had only been home with
us 2 months. Jessica's life is testament to the
expertise, love and prayers of so many people.
Jessica is enjoying every minute of this life she fought
so hard for and we are so privileged as a family to be
walking with her on this journey which began with
hope and has answered our greatest prayer to be
able to bring her home and love her.
Elese Canterbury (Jessica’s Mum)
Hearts of Hope Australia
Ph (03) 9513 9030
c/o Princess Margaret Hospital
Roberts Road
Subiaco WA 6008
Ph: (08) 9340 7996
Bereavement Support
SANDS Australia
Suite 208
901 Whitehorse Road
Box Hill, Victoria 3128
Ph (03) 9899 0217
www.sands.org.au
SIDS and Kids
Suite 3, 98 Morang Rd
Hawthorn Vic 3122
Ph: (03) 9819 4595
www.sidsandkids.org
The Compassionate Friends
NSW
QLD
VIC
WA
(02) 9290 2355
(07) 3254 2657
(03) 9888 4944
(08) 9486 8711
Online Support and Information
Congenital Heart Defects.com:
www.congenitalheartdefects.com
Congenital Heart Information Network:
www.tchin.org
Heart Children NZ: www.heartchildren.org.nz
HeartLine: www.heartline.org.uk
Little Hearts: www.littlehearts.net
Page 16 of 20
Taylor’s Update
Taylor Matisse Colvin has
HLHS and is now 2 ½
years post Fontan. On the
22nd September last year
she celebrated her 6th
birthday with a “Spider”
theme party. Taylor is a
strong minded and
determined girl who enjoys
her own individuality. She
is very aware of her cardiac
condition, however does
not allow it to interfere with
her life. This year has seen many FIRSTS for Taylor,
including her first year at real school; her first visits from
the Tooth Fairy; her first school disco; her first time on
the school bus; her first sleepover at a friends house….
the list goes on. The following is Taylor‟s own first
update (with a little help from Mum for the typing)…….
My name is Taylor and I am five and a half. I go to school in
„Kinder Nagoya‟. I love school and all my friends. I like days
when I can order my lunch from the canteen the best. My
favourite things at school are playing with my skipping rope,
ball with my friends, drawing, reading and writing. I also love
colouring in. The thing I am best at is being nice to other
children when they are sad.
The painting on the back cover is one I did of me and my
friends. I am at the top of the picture. Caitlin is my best friend
at school and my next-door -neighbour. Alexandra is my best
friend from pre-school. Anastasia learns violin with me and we
go to Music School together. We are also going to play in
some concerts together this year at the National Museum. I
think we are going to play some of the songs from my Suzuki
Book as well as “Twinkle Twinkle”, “Row Row” and “Mary Had
a Little Lamb”.
God put all the animals in
the world, and I love all of
them. God also gave me a
happy and loving family, so
I am very lucky. I love my
baby sister very much.
She tries to copy
everything I do and we
both love pink. When I
grow up I want to be a
Mum, a Doctor, a Nurse, a
Vet, an artist and a
Gardener. I think my Mum
and Dad will turn our dog
kennel into an art studio and I will live there when I leave
home. I will take my dog Chip and he will be allowed to sleep
inside with me.
I love water. There is a water-colour painting I did of a bridge
and the reflection on water on the back cover. We went to the
beach for holidays and I went swimming and boogie boarding
every day. We also went on a huge water slide and I wasn‟t
even scared. Some of the grown-ups didn‟t even go down
because they were too scared.
I am in lane seven and my Dad
is in lane eight.
I also go to swimming lessons
on the weekend. I swim in
Caitlin‟s pool in the deep end
all by myself without a noodle
or anything now and you can‟t
even touch the bottom. I also
love riding my bike and playing
with dolls. My favourite DVDs
are Charlotte‟s Web, Brother
Bear, Spirit and Toy Story. I
also love Eliza out of The Wild
Thornberry‟s.
Support and Resources: Centrelink
Centrelink delivers a wide range of services to families. Parents of children with severe medical conditions may be entitled to
the assistance from this agency. Completing application forms and dealing with bureaucracy at a time when your child is ill
and undergoing surgeries is probably the last thing parents need but it is important to apply as soon as you can. Hospital
social workers can assist parents with this. For more information about Centrelink‟s services, please call the Dis ability,
Sickness and Carers Enquiry Line on 13 2717 or visit their website at: http://www.centrelink.gov.au
Carer Allowance
Carer Payment
A person may get Carer Allowance if they look after a child
with a disability or severe medical condition who requires
additional care or attention in their own home. Apply for
Carer Allowance even if your child is in hospital as claims
in relation to HLHS babies undergoing palliative surgeries
can be approved under the hospitalisation provisions of
the Social Security Act. Carer Allowance is a non-taxable
payment that is NOT subject to an income or assets test..
It is much more difficult to have a claim for Carer Payment
approved. Apart from it being Income and Assets tested,
Centrelink has strict guidelines as to what constitutes a
"profound disability or medical condition".Families with
HLHS children may be eligible for this benefit even if it is
only for a limited period. Many children with complex heart
conditions meet Centrelink's definition of "having a severe
medical condition" while they are undergoing surgeries.
Health Care Card
Recipients of Carer Allowance automatically get a Health Care Card for their heart child. If for some reason your Carer
Allowance claim is rejected you may still be entitled to a Health Care Card. The card entitles you to reduced cost medicines
under the Pharmaceutical Benefits Scheme (for that child) as well as a limited number of concessions from state and local
government authorities.
Hearts of Hope Australia
Page 17 of 20
“In Memory”
Otis
27 Sep 2002 - 29 Dec 2003
Joshua
10 - 16 Nov 2000
~ In Memory ~
It was but a fleeting moment in time
A tick of a clock, one melodious chime
Joy in our hearts your arrival installed
Each memory with love, vividly recalled
The heartache, anxiety and tears we went through
But all the hope we could muster depended on you
That tick of a clock, that moment in time
That night that you left us and passed through that door,
Memories of you in our hearts will endure
For it is better to have known you,
And then to have loved you
Than to have never loved you at all.
Kurni
Harrison (Harry) Charles Morey
2 - 11 Oct 2003
Zak Ian John Smith
19 - 28 Jan 2006
Georgia Kate
27 May - 3 Jun 2003
Twin to Jake Tyler John Smith
Our little angel loved and missed always…
Mummy, Daddy, Madison, Courtney and
Kaiden.
Max ... our perfect little guy, we are so
proud of you and so proud to say we are
your family. One of a twin set you will
always be. Such a special, beautiful,
extra loved part of our amazing family for
always. Sorry sweetheart, words just don't
adequately express how much we love
you and miss you but I am sure you
know. Our photos will never show our
whole family, luckily Madi's pictures will
always include you. PS Henry hopes
Heaven's kindy is lots of fun but he really
wishes you could be at kindy with him and
have the same bag too. Love you for
always our beautiful boy.
Max
28 Jun - 11 Jul 2002
“Some people only dream of
Angels… We got to hold one
in our arms…”
Zak you left us one year ago
taking with you a piece of our
heart which belongs to no-one
else. Whilst we are empty
inside without you – we are
more fulfilled than ever for
having you as our son.
You live on in your twin
brother Jake. xxx
Andrew George Lillis
13 - 19 Feb 2004
Andrew,
We imagine what you would be like this
Summer as a big, 3 year old boy. You'd
be giggling and running circles around us in
the sun at the playground. Instead, we
watch the colored birds sing while they play
in the sky and we think of you. We see
beautiful rainbows and we think of you. We
miss you dearly. Happy 3rd birthday.
With love, big brother Christos, baby brother
Matthias, Mum and Dad.
Hearts of Hope Australia
Nicknamed “Valentine's Baby”
by his big brother Christos.
Page 18 of 20
“In Memory”
Madeline Grace
24 Mar - 2 Jul 2003
Darcy Steven Elston
2 - 5 Jun 2003
God gave us a daughter
For such a little while;
He put a bit of heaven
In the sunshine of her smile.
We do not remember days, we remember moments*
Forever beloved and missed
- Daddy, Mummy, big sister Anna-Jayne, little brother
Cameron & little sister Poppy-Mae.
He took dust from the brightest twinkling stars
And made her sparkling eyes;
And now, she's gone back home to God,
To play up in the skies.
Jessica Grace
16 - 24 Nov 2005
And though she left us quickly
That our hearts are grieved and sad,
We know she lives with God
And her small heart is glad.
And though our precious darling
Was just a rosebud small;
She'll bloom in all her beauty
On the other side of the wall.
Helen Steiner-Rice.
Grace Madeline
6 Nov 2003 - 25 Mar 2004
Given to her family as an extra special gift
Remarkably brave and strong
Adorable, gorgeous and cute
Cherished and loved by her family
Eternally cared for by angels in heaven
You were a gift sent straight from heaven.
Given to us from God.
We didn't know how much you would teach us
About the meaning of love....
For true love sometimes means letting go
Of someone precious and dear.
That is what we were forced to do...
Although we wanted to keep you here!!!!
However, this is quite a selfish wish.
One we know we should ignore...
But, sweet Jessica, we truly do believe
That God must have needed you more....
Perhaps to be an angel now,
Full of wisdom and love....
Watching over those of us who love you
From the shining stars above.
We miss you more than you can know,
You will never be replaced...
In our hearts and memories forever,
Will be your sweet and innocent sleeping face.
Neo Riley
22 Feb - 4 Apr 2006
Neo Riley Stevenson, your big beautiful blue
eyes gaze at us daily, the memory of your
courage is always in our hearts.
…eternally loved, forever missed.
much love Mummy, Daddy, Ardy and Briar
Hearts of Hope Australia
Page 19 of 20
Joseph (Tas)
Lily (NSW)
Chloe (Vic)
Chanice NSW)
Nathan (WA)
James & Jack (WA)
Haydan (NSW)
Cameron (Vic)
Art by Taylor…
Taylor (NSW)
Hearts of Hope Australia Limited (ABN 70 110 635 517)
HEAD OFFICE: 39 Crystal Downs Drive Blackmans Bay TAS 7052 T ELEPHONE: [03] 6229-8169