UK`S FIRST CONGENITAL HEART RESEARCH CENTRE OPENS

FORMERLY KNOWN AS THE GROWN UP CONGENITAL HEART PATIENTS’ ASSOCIATION
PAGE
4
In This Issue...
How will research help?
PAGE
6
Find out from UCS
Research Centre launch
PAGE
9
A great turn out
Scarred FOR Life
PAGE
17
The new exhibition
What the future holds?
PAGE
18
Hopes and expectations
Annual Conference 2016
Book online now!”
UK’S FIRST
CONGENITAL
HEART RESEARCH
CENTRE OPENS
See Page 3
issue
84
GUCH NEWS
Summer 16
Supporting young people and adults
born with a heart condition
Editor’s letter
UK’s First Congenital Heart
Research Centre Opens
The first ever dedicated congenital
heart research centre in the UK, part
of only a handful worldwide, launched
at University Campus Suffolk (UCS) on
4th May 2016. We were delighted to be
joined by people from many walks of
life including patients, new and old and
of all ages, families, friends, volunteers,
researchers, artists and more. It was
fantastic to meet Max and his extended
family, who at three months old was
our youngest attendee, and to see Judy
Shedden, who with Professor Jane
Somerville launched The Somerville
Foundation over 21 years ago.
Inspiration &
Dedication
Welcome to our summer edition of GUCH
news. As ever our charity and its supporters
have been keeping themselves busy.
One very notable event, at the start of
May, was the launch of the first dedicated
Congenital Heart Research Centre at
University Campus Suffolk (UCS), which was
well attended by the great and good (and me
too), with significant media coverage from
newspapers and TV channels alike. Even if
the BBC did edit me out in the evening news
broadcast we got our point across and the
ITV News coverage was better anyway.
Running alongside the launch was our
second ‘Scarred FOR Life’ photo exhibition,
with some very inspiring stories and some
3-D heart models, created and painted by
some of the UCS Fine Art students. I would
personally like to thank all of the volunteers
who allowed us to tell their stories and bring
those messages to life with images.
The ‘Scarred FOR Life’ programme continues
to motivate others to take part and we hope
to cross the Irish Sea later in the year to
work with other groups there to replicate
the message. The PR strategy about making
our voice heard is key to the Somerville
Foundation. Once we have got an audience
and a clear story to tell, we can raise further
awareness, raise more money and do more
good work.
One of the key areas for us remains mental
health. We have just had mental health
awareness week and I recently attended a
hospital network meeting where the mental
health of patients was an important subject.
It is clear that mental health remains a
challenge for this area of medicine and we
are looking at ways to reach out to more
people and support more hospitals with our
programme of activities.
cardiology. I heard a very frightening statistic
that last year only 3% of trainee doctors went
into cardiology. Let us remember that heart
disease is still the biggest cause of death in
the UK and so only a fraction of that 3% will
end up in the congenital sector. It probably
isn’t even a whole doctor! So this awareness
campaign of ours is not to just find better
treatments, help us raise more cash to help
people suffering now, but also to ‘potentially’
make a budding doctor or nurse or other
health professional just pause and then
think – hmm – “what about treating GUCH
patients, they’re a nice bunch of people”?
The state-of-the-art research centre
will focus on finding more effective
ways to treat and support individuals
with congenital heart conditions. The
partnership will utilise UCS’s expertise
in cardiovascular science, exercise
physiology and psychology and The
Somerville Foundation’s expertise
in supporting people living with
heart conditions. The centre will be
2
f
www.facebook.com/thesomervillefoundation
f
http://bit.ly/ThesfFBgroup
Join our private Facebook group
www.twitter.com/_thesf
John Richardson,
National Director
charities, and volunteer Val Monk and
TSF’s Patient Services Manager Helen
Barker were running to raise money for
The Somerville Foundation.
Dressed as a nurse and a junior doctor,
because they are real life superheroes,
they both thought their costumes
were good enough to enter the adults
costume competition but just narrowly
missed out to a ‘Mrs Doubtfire’!
It was great fun, very well organised,
and there were loads of spectators
cheering them on around the route.
Rob Nicoll
Chairman
Helen managed to complete the 5km
course in 50 minutes (walk, jog, walk)
and Val stormed through her 10km, in
her joggish wobble, in 1hr 18mins.
Please visit us online
www.thesf.org.uk
“We have seen patients’ lives cut
tragically short as a result of their
congenital heart defects. We know that
there is a world of new discoveries, better
treatments and surgical techniques that
will in the future help those born with
heart conditions live longer, healthier,
happier lives. Our partnership with UCS
provides a fantastic new opportunity
for patients. The research undertaken
at this new centre will improve the
lives of individuals with congenital
heart disease and improve the cardiac
screening of the young in the UK.”
Our Superheroes!
As ever thank you for your continued support
and the great work done across the UK by
our team of volunteers. Enjoy the summer
sunshine.
We are also piloting a simple idea which
should help encourage young aspiring
doctors to enter the world of congenital
screening members of the public, as
well as sportsmen and women for heart
conditions, and research into new areas
will be conducted, including tissue
engineering and psychological research
exploring a link between post-traumatic
stress disorder and congenital heart
disease.
What a fantastic day was had at the
doitforcharity.com Superhero Run on
15th May 2016.
There were over 3,000 people taking
part to raise money for different
Well done and thank you very much.
Together they have raised over £1,200.
To take part in next year’s run, contact
Helen on 01473 252007 or email
[email protected]
Welcome to the summer
issue 2016! This is a special
issue devoted to the launch
of the UK’s first dedicated
congenital heart research
centre and the new Scarred
FOR Life exhibition.
We are delighted to be working in partnership
with University Campus Suffolk to open the
research centre and look forward to seeing new
ways of improving treatments, surgery and
ultimately the lives of Grown Up Congenital
Heart (GUCH) patients.
As well as working in partnership with UCS, The
Somerville Foundation is happy to assist with
other research, where possible. If you would
like to take part in, or are managing a research
project, please contact [email protected].
If you are interested in taking part in our next
Scarred FOR Life exhibition, please send an
email to [email protected]. We welcome
applications from all GUCH patients, with or
without physical scars.
Our next conference will be held in Leicester on
17th September 2016. See page 18 for details on
how to book.
We are delighted to have filled all places for
London’s Royal Parks Foundation Half Marathon
in October. This event is one of the most popular
of the sporting fundraisers and places are
often hotly contested. If you would like to take
part next year and fundraise on behalf of The
Somerville Foundation, get in touch today!
If running is not your thing, there are many
other ways you can raise money for TSF. Check
our website for more details. For just £1 per week
you might choose to give yourself a chance to
win £25,000 by playing our lottery. If you shop
online, find out how you can help us, by doing
what you already do.
Thank you to each and every person who
contributed their time, skills, experience and
support to this issue. If you would like to help
with a future issue, please get in touch to discuss
any ideas you have.
However you are spending it – sunning yourself
in the Mediterranean, caravanning in Devon,
dancing your socks off at one of the great
festivals lined up around the UK, or none of
those things (writing an article for GUCH News,
perhaps!?) have a lovely summer. And, as ever,
if you need any advice, help or support, we are
always here.
Helen
If you would like to submit an article or an
idea for our next issue, please ensure we have
received it no later than Tuesday 30th August
2016. We recommend that you contact us
first to ensure we are expecting your work. We
reserve the right to decline content and edit it
appropriately.
3
Research
Policy
where the whole will be greater than the
sum of its parts.
Who else will be involved?
We are establishing a new committee
to help develop the research centre.
Initially we will include the team here
at UCS and The Somerville Foundation
including Trustees Richard Bird and Fiona
Kennedy. We are also hoping that we will
receive support from the Royal Brompton
Hospital and we have had initial talks
with Professor Gatzoulis about the
potential for working together.
Exciting
Possibilities
For this special issue we speak to Dr
Christopher Turner from University Campus
Suffolk (UCS). Dr Turner is a world-renowned
cardiovascular biologist. He obtained his
PhD from University College London and
has worked in both academia and the
pharmaceutical industry. Prior to joining
UCS, Dr Turner worked at the Massachusetts
Institute of Technology (MIT) in the USA
where he led a research programme focused
on identifying genes that are essential
for the development of the heart and the
vasculature. He has also worked at Cancer
Research UK London Research Institute and
GlaxoSmithKline.
It was fantastic to see all the coverage of the
launch of the new congenital heart research
centre, however not everyone will have seen
this and GUCH News readers will want to
know more. Perhaps you can start by telling
us something about your own background?
What first led you to an interest in
congenital heart disease?
4
My interest in congenital heart disease
started when I was placed at Harefield
Hospital as undergraduate student. On
my first day I witnessed Professor Sir
Magdi Yacoub carry out heart surgery on
a CHD patient, and from that moment
knew I wanted to study how such
conditions arise.
That’s very interesting; Professor Magdi
Yacoub is certainly a hugely successful
and inspirational cardiac surgeon. Who
else will you be working with at UCS?
I will be mainly working with Dr Gavin
Devereux, an expert in the cardiovascular
system and Dr Manos Georgiadis who
is an internationally known expert in
sport and exercise psychology. The goal
however is to utilise all of the expertise
that we have at UCS. This includes the
stem cell researchers, computer scientists
and imaging specialists that we have
within our department.
What research facilities does the
University have?
We are very lucky at UCS in that we
really have some of the most up to
date and state of the art facilities. We
currently have molecular biology, tissue
culture, microscopy, sports and exercise,
and analytical laboratories. In addition,
we have consultation and clinical
training rooms, a virtual radiography lab,
Research seems to be advancing at
incredible speed. What discoveries have
you found to be the most interesting and
optimistic recently?
at UCS ... we really
have some of the
most up to date
and state of the art
facilities
One of the most exciting breakthroughs
in recent years is the discovery that
stem cells can be derived from a donors
own adult cells. Stem cells can form
any cell of the body, including cells of
the heart, and therefore can be used to
generate healthy tissue to replace that
damaged by trauma or compromised
by disease. Previously, the only source
of large numbers of stem cells was
from embryonic tissue, which, along
with the ethical implications, requires
patients receiving tissue or cells
derived from the donor stem cells to
take immunosuppressant drugs for the
rest of their life to prevent rejection.
The discovery that stem cells can be
generated from one’s own skin cells, for
example, overcomes these hurdles and
opens the possibility for stem cells to be
used more widely in the clinic and for
research.
What exciting possibilities are there for
the future?
and digital imaging and diagnostic suites.
How will the partnership work with The
Somerville Foundation?
I think the partnership with The Somerville
Foundation will work very well. We have
complimentary skills and resources.
At UCS we bring academic expertise
and everything necessary to undertake
research. The Somerville Foundation has
years of experience working with patients,
cardiologists, specialist centres and of
course the NHS. It’s certainly a partnership
It’s a real possibility that in the near
future we will have the ability to replace
dysfunctional hearts with fully functional
laboratory-grown organs. We can
already grow more simple organs, so
it is only a matter of time before more
complicated fully functional human
hearts can be created and successfully
transplanted into patients.
That’s amazing! Many thanks Chris.
Everyone at The Somerville Foundation
is really looking forward to working with
you and the team at UCS. Let’s make this
happen!
As well as working in partnership
with UCS, The Somerville
Foundation is happy to assist with
other research, where possible. If
you would like to take part in, or
are managing a research project,
please contact us as below.
Overview
The Somerville Foundation welcomes the opportunity to work in partnership
with researchers when their research is likely to benefit patients and the patient’s
participation will be empowering and their experience of it will be rewarding and
pleasant.
We have recently launched our Big Six Campaign so that in the future we will be
able to make grants towards research funding. We are also happy to join you in
writing joint bids to funding bodies.
Conditions of participation
Process
Research proposals will need to1. Have been passed by the researcher’s own ethics committee.
2. Include a brief risk assessment. This should demonstrate that possible risks to
patients have been considered and that appropriate steps have been taken to
manage those risks.
3. Be recommended to TSF’s board of trustees by the National Director
4. Be approved by TSF’s board of trustees
Please approach The Somerville Foundation in good time to allow this to happen
(usually a minimum of 3 months).
Participants
1. All those involved will have volunteered in full knowledge of what is expected
from them.
2. Patients will understand :§§ Why research is being undertaken
§§ Who it’s for.
§§ How the results will be used.
3. Patients will have full access to the research findings.
4. Patients will have their own personal expenses fully covered.
5. Patients will be treated with dignity, courtesy and respect at all times
Contact
Please call John Richardson on 01473 252007 or e-mail [email protected] and he
will be very happy to find ways to support your research.
5
UCS Research
Centre Launch
On a glorious spring evening in May, at University Campus Suffolk (UCS),
in partnership with The Somerville Foundation, the UK’s first congenital
heart research centre was launched. This was a monumental occasion
and we were delighted to be able to share it with all who attended.
The pictures are reproduced with the kind permission of James Fletcher,
UCS and the East Anglian Daily Times.
6
7
These scars are real. They are battle scars.
They bear witness to the greatest battle any
of us will ever face, the fight for life itself.
Without their scars those featured in the
Scarred FOR Life exhibitions would not be
alive today. They have been Scarred FOR Life
literally in that the scars themselves were a
necessary part of life-saving cardiac surgery.
They are Scarred FOR Life too, as the scars
may fade over time and perhaps even become
less noticeable, however they will never, ever,
go away.
Those who show their scars had no choice or
control over the heart defect that has made
their scars a necessary and permanent part
of their life. Their condition wasn’t caused by
lifestyle, smoking, diet, lack of exercise or any
factor that they could possibly have controlled
themselves. Congenital heart patients were
simply born with their condition.
For many years I have had the privilege of
Bernhard Reed
Bernie Reed was born as a blue baby with Tetralogy of Fallot.
Until he was nine years old he needed to be ferried around in a
pushchair. Before he was 13 years old he had had three open heart
surgeries. As a child he spent a lot of time at home, couldn’t go
out to play with other children and was unable to take part in any
sports.
“When I was in my teens and mid-twenties I was very aware of my
scars as people did tend to stare.”
Until I had surgery when I was nine years old I could only walk short
distances and was mostly ferried about in a pushchair. After my
operation in 1957 I was able to get around on a tricycle, but I still
could not walk any distance.
8
As a child, I could not partake in any sport, swimming or walking. I
working with and sharing the lives of just
some of the hundreds of thousands of people
who are living today with a congenital heart
condition.
I have been part of some of the best and
worst times of their lives, the happiest and
saddest and witnessed victory, success and
failure at close hand. I am amazed by the
tenacity and fighting spirit that I’ve seen, as
well as the compassion, warmth and support
patients give to one another.
I am proud to have been part of the team
working on the Scarred FOR Life exhibition,
proud of The Somerville Foundation and
grateful to all those who took part and who
allowed us to photograph them and told us
just a little of their amazing life stories.
I very much hope that you too can learn more
about this fantastic group of people and help
The Somerville Foundation to make the world
a better place for congenital heart patients.
Thank you
John Richardson
National Director
www.scarredforlife.org.uk
Julie Scanes
spent a lot of time at home as I was not able to go out and play with
other children. I would faint daily when I was young, however as I
grew older it was less frequent.
Julie was diagnosed with a heart murmur at the age of 13 during a
routine school examination. She did not undergo lifesaving surgery
until she was 26 years old.
After my third operation, in 1961, I attended a special school until
1964. I worked for 40 years until I was medically retired in 2004, when
I had my fourth operation.
“My scar signifies the fighter in me and how precious life is. It gave
me the opportunity to go on to become a Mum. After surgery I was
able to have my wonderful son Robert. It was too risky before surgery
due to very high blood pressure. I no longer live in fear and isolation.”
When I was in my teens to mid-twenties I was aware of my scars, as
people did tend to stare but, as time had passed, I don’t really think
about them.
If I were to be asked what my hopes are for the future, I would say
my hope is to achieve what I can each day. I do feel myself slowing
down in recent years, however I enjoy visiting different places with
my wife and we are looking forward to the Somerville Foundation
Stirling weekend in July.
I was diagnosed with a heart murmur at the age of 13 at a routine school
examination but unfortunately did not undergo lifesaving surgery until
the age of 26, under the excellent care of the National Heart Hospital in
London.
I went on to have my wonderful son Robert; I had to wait until after my
surgery to fall pregnant, as the risks were far too high before my operation.
My scar signifies to me the fighter in me and how precious life is.
I give thanks to the eminent surgeon Mr Donald Ross for not only saving
my life but giving me the opportunity to go on to become a Mum. We are
both so lucky to be alive.
I feel that since I was diagnosed life has really changed for congenital
heart patients, not only in the medical field, but in the support and advice
now available which I feel is paramount. Had it been available maybe I
would have undergone surgery at age 13 instead of living with fear and
isolation until the surgery eventually took place.
Julie was interviewed on the day of the research centre launch by
Ian Barmer from BBC Look East, along with Dr Chris Turner from
UCS. You can view the interview online: http://bbc.in/22q1T80
9
Ella Stanley
Ella Stanley has Transposition of the Great Arteries. Her first
surgery was at five days old, her second at age three.
“Just before my 21st birthday I was told I might need a triple
coronary heart bypass, which meant that they would cut into my
legs and arms to harvest veins, but all I wanted to do was plan my
21st birthday party.
It has taken me nearly two years to come to terms with my new
scar and some days I have really struggled to get out of bed, let
alone getting dressed and carry on with the day.”
I was born with Transposition of the Great Arteries and at five days
old I had an arterial switch operation. Then at three years old I had
a reconstruction of my left pulmonary artery, but obviously all I ever
knew of that was the scars running the length of my chest, and the
stories told to me by my parents.
Growing up I was very lucky as my heart condition was under control
and didn’t cause me too many problems, other than several closed
heart procedures. It only became obvious to me that I wasn’t quite the
same as my peers when it was time for P.E. and the dreaded changing
rooms. I don’t think the stares or the comments ever became easy to
deal with, but I had lovely friends who always looked after me.
10
I remember going to Alton Towers and not even considering my heart
Claire Choong
condition. I knew I had to avoid some rides, but was not prepared to
only be allowed to ride the small children rides. It was hard knowing I
felt fine and just wanting to have fun and be like everybody else.
I didn’t really know I was that ill, until just before my 21st birthday.
I received the devastating news that my left coronary artery was
blocked and had been since my first operation. I was horrified and
so freaked out, as they told me I might need a triple coronary heart
bypass, which meant that they would cut into my legs and arms to
harvest veins. All I wanted to do was plan my 21st birthday party!
Instead I became too scared to do anything; I felt betrayed by my own
body and did not want to face another operation. I was fortunate
enough that they managed to only use veins from my chest walls and
used the original scar on my chest to perform the whole operation,
which luckily turned out to be a single coronary bypass.
Claire has Transposition of the Great Arteries, Ventricular Septal
Defect and Pulmonary Stenosis. She has had surgery twice,
when she was three years old and when she was 30, and has a
pacemaker.
As an adult, she is less bothered about what people think about
her scars, but growing up wondered what it was like to be normal.
“I still suffer from anxiety and a lack of self-confidence which are
rooted in my childhood of being and feeling ‘different’ and unable
to do things that other children could do. I think I still want to be
‘normal’, even though I know there’s not really any such thing.”
It has taken me nearly two years to come to terms with my new scar
and some days I have really struggled to get out of bed, let alone get
dressed and carry on with the day.
I used to try and hide my scar because I didn’t want other children to
notice it or ask me about it. I always feared people making a fuss and
was very self-conscious. As an adult, I became less bothered about
what people thought about my heart condition, and now I just explain
it to people if they ask about my scars, which they very rarely do.
The other week, for the first time after my operation, I chose to wear
a low cut dress and show off my scar. Even though people may look
and whisper, or even ask outright what it is, I know that nobody can
ever put me down for my scar. It is my battle scar and proof that I can
conquer whatever life throws at me.
I think it’s much worse to have surgery as an adult because you’re more
aware of what is going to happen to you, as well as the risks involved,
and you remember more of it afterwards as well. I’ve been feeling better
since I had my pacemaker fitted in 2009, although my heart has got a
bit worse since I had a baby, our daughter Anna, in 2014.
I still suffer from anxiety and a lack of self-confidence which I think
are rooted in my childhood of feeling ‘different’ and unable to do
things that other people could do. I find myself being more tired
nowadays too. Consequently I’m doing fewer things, which makes me
feel guilty (especially when I don’t do so much with Anna) and lazy,
even though I know it’s OK to rest. I’ve also started to miss out on
things I used to do for myself, like sing in choirs, because I’m too tired
from working and looking after Anna, but maybe this is just part of
being a parent!
I’m quite happy with my scars now. They don’t bother me at all, really,
and I don’t try to cover them up. I think my heart condition is probably
the most interesting thing about me, so I don’t really want to hide it!
I hope to be as healthy as possible, in the future, for as long as possible,
and I would particularly like to see my daughter grow up to be happy
and healthy. I hope to remain ‘able’.
I am afraid of my condition getting worse and my life becoming more
limited and having less control over what happens to me. I’m also
afraid of having any more medical procedures, which I will have to at
some point. I don’t want to have any more things done to me.
I think I still want to be ‘normal’, even though I know there’s not really
any such thing.
11
Keaton Stone
Keaton was born blue, with Transposition of the Great Arteries. He
went straight into intensive care. His mother couldn’t even hold him.
That day he was christened in the incubator as he wasn’t expected to
last the night. He held on until life-saving surgery at 11 months old.
“The docs took me off games at school, just in case I had problems
and physically I’ve had to slow down lately but that might be age!
I’m proud of my scar and what it means and won’t let being a heart
patient stop me living my dreams and life to the fullest. I realise not
everyone with a heart condition is like this so I thank my lucky stars.”
I was born blue and rushed straight into Intensive Care. I had my first
operation at 11 months old, the Senning procedure, as I had been
diagnosed with Transposition of the Great Arteries. I grew up to be a
healthy child but the doctors took me off games at school just in case.
My Mom bought me ‘The Usborne Guide to the Universe’ when I was four
years old and thus began my lifelong passion for astronomy.
12
As I grew up a little more, I got into videogames massively, then music
at around 13. My passion for music led me to join a band, and then I
formed my own and became the songwriter. We had momentary success
and played all over the country. The band later split and I didn’t know
what to do with my life until one day I saw a job for the BBC by chance
and amazingly beat lots of people to get it and then started as a runner
on ‘Gardeners’ World’.
Raksha Agheda
My love of astronomy led me to work on ‘The Sky at Night’ and I was
honoured to work closely with Sir Patrick Moore who was my hero. That
led to many other shows and I have worked on every ‘Stargazing Live with
Brian Cox’. My work has also meant that I’ve been lucky enough to film at
many NASA sites and had amazing access to play with Mars rovers and
space probes being built.
I also worked on ‘Volcano Live’ in Iceland with Kate Humble and was
privileged to work with Stephen Hawking on a documentary about his
life. I’m also close to Buzz Aldrin and his family now and even took them
to Stonehenge for a day out last year.
When she was growing up Raksha was defined as “the girl with the
heart problem.” Her health is not as brilliant as it used to or could
be but she does not let her heart condition define her.
I do not think about my scars until someone actually notices and asks.
I don’t think I give people the chance. The observer is more likely to be
thinking “she is mental!”
“I was of the generation who were used to the possibility that we
would not live out our full years and as a result many of my friends
are no longer around. Yet I am thankful every day and make the
best of each day. I have supportive family and friends and I hope
other heart patients are encouraged to live life to the full.”
I worry that as I achieve my dreams, which include getting fit and
weight control, my heart will start to define me again and I will
become really unwell.
“The girl with the heart problem” that was how I was defined as a child
along with all sorts of stories about what was actually wrong with me.
I am so incredibly lucky to have worked with many wonderful people and
visited incredible places all around the world. I love filming and still work
on music on the side, with my own album and a pop album for a new
female artist. I now live in London but go home to Staffordshire as often
as possible to tickle my three beautiful little nieces.
I was also the girl who could draw and paint and win prizes for
my artwork. Yet somehow I ended up with a lot of pointless and
misunderstood pity for my heart condition.
I hope the future is bright for me. I do feel myself slowing down slightly
lately, but that might be age!
As an adult I became determined to be the girl known for artwork.
Such was my motivation that I almost forgot about my heart and
ended up with an art degree. I would be reminded when I had to fill in
a form for work and my cardiology appointments.
I am proud of my scar and what it means and I won’t let being a heart
patient stop me living my dreams and life to fullest. I know I’m very lucky
and I do realise not everyone with a congenital heart condition is as
fortunate as me, so I thank my lucky stars.
Now I am a qualified librarian. My health is not as brilliant as it used
to or could be but I do not let my heart condition define me. My heart
is still the most important part of me, after all, everything significant
including emotional, physical and spiritual springs from the heart
I was of the generation who were used to the possibility that we
would not live out our full years and as a result many of my friends
are no longer around. Yet I am thankful every day and make the best
of each day. I have supportive family and friends and I hope other
heart patients are encouraged to live life to the full.
“The girl with the heart problem” that
was how I was defined as a child
along with all sorts of stories about
what was actually wrong with me.
13
Richard Barnes
Richard was born in the 1960s and at 13 years old had his first open
heart surgery.
“Sometimes I feel guilty at having survived when so many others
didn’t. When I was a teenager I was conscious of my scar, especially
when swimming as it went blue in the cold. Recent surgery involved
cutting through my old scar and replacing it with a new, neater one.
The mental scars are sometimes deeper than the physical ones. My
fear is that something may go wrong and I will leave my wife and
children on their own.”
Steven Bradley
My most recent open heart surgery involved cutting through my old scar
and replacing it with a new one. My current scar is a lot tidier and neater
than my previous scar which was quite wide and stood out more. I’d had
my old scar for 37 years and it is quite odd to look in the mirror and not
see it any more, in a way I miss it. When I was a teenager I was conscious
of my scar, especially when I went swimming (it went blue in the cold) and
was glad when my chest hair grew, helping to hide it.
Now, I have a mechanical valve fitted and I hope to lead a long and
healthy life (albeit a slightly noisy one with the background click, click,
click). My fear is that something may go wrong and I leave my wife and
children on their own.
My school years were difficult as I wasn’t able to play sport and spent
many hours stood on the touchline, watching football during the
compulsory games lessons. However, the scouts helped me join in with
outdoor activities and my family and friends were very supportive.
14
Being born in the 1960s I knew that the chance of surviving to adulthood
was about 50% but the death of fellow heart patients still came as a
shock. Survival rates were low. At 13 years of age my first open heart
surgery was an eye-opener, one of my friends on the ward didn’t survive
her operation and I found another cardiac patient dead on the floor of
the bathroom. Sometimes I felt guilty at having survived when so many
others didn’t. The mental scars are sometimes deeper than the physical
ones.
“Sometimes I felt guilty at having
survived when so many others
didn’t.”
Steven had his first surgery at 18 months old and more recently has
had two mechanical valves fitted. His five year old son was also born
with a congenital heart condition.
“This was tough to deal with as I felt quite guilty, that this was my
fault! My son has had three operations already. We speak about our
special hearts and our scars that are in the same place. Life with a
child and one that holds much uncertainty for both of us is difficult.
Even though we both have limitations I hope that I am able to
inspire my son.”
My own story is probably very similar to others in that I had an operation
at around 18 months and then went through school relatively well. It is
when I moved into adulthood that my story and life began to change.
I have always played sport and was encouraged to do so by my parents.
I was physically active and able and have travelled independently
through Asia, things that I am very proud of.
I was discharged from child services when I was 18. I then started
having a few issues and was lucky enough to end up at the Queen
Elizabeth Hospital in Birmingham. I was operated on in 2007, where I
had a mechanical valve fitted, and one repaired.
In 2008, I was chosen to run as a Medtronic Global Hero. Global Heroes
is a cooperative effort between the Twin Cities in Motion and the
Medtronic Foundation. Each year, 25 athletes are selected to run as
a team in the Medtronic Twin Cities Marathon or the Medtronic TC 10
Mile. Even with my heart condition I was able to run a half marathon
in the USA.
A few weeks after I returned I saw my consultant and was informed that
I needed another valve replacement. I now have two mechanical valves.
I work in disability sport and coach a men’s hockey team. I recently
coached a team of disabled hockey players in a European tournament
in London where we played against Spanish, German, Portuguese and
Italian national teams.
I am immensely proud of the role I have and the fact that I am able
to empathise (slightly) with some of the people I support through my
employment.
There is maybe one different angle to my own story and that is that I
have a son and a daughter. My son is five years old and during pregnancy
we found out he was going to be born with a heart condition. This was
really tough to deal with, I felt quite guilty and that this was my fault!
My son has had three operations already; we speak about our special
hearts and our scars that are in the same place. There are limitations for
both of us, but I hope that I am able to inspire my son to always have a
go and get stuck into life!
15
Vikki Irwin
David Wilson
What the future holds...
Hopes and expectations
Vikki was born with Atrioventricular Septal Defect but wasn’t
diagnosed until two months later when she turned blue and stopped
breathing. Surgery followed to repair a hole in her heart and rebuild a
heart valve. She had a second surgery at 21 years old.
In 2001 I fell pregnant with my son Max. He was 8lbs 7oz at birth, with a
healthy heart. He’s now 14, almost six foot tall and has a healthy appetite.
I work full-time as a journalist for the BBC and have enjoyed a varied
career. I am married and have a step-daughter as well as my son.
“Going through this operation as an adult was very different and only
those who have gone through something like it can understand the
physical and emotional toll it takes. I know that the journey with my
scars may not be over and I could need further surgery in years to
come. I can’t deny that this doesn’t terrify me.”
Every day I wear my operations for all to see, I am proud of my scars. They
may have faded with time but what they represent is always with me; my
determination to survive as a baby, as a child and as an adult. They are
why I am here and why I am the person I have become.
I was born in 1977 with an Atrioventricular Septal Defect or AVSD for
short. I wasn’t diagnosed at birth but two months later, when I got a cold
and much to my parent’s horror turned blue and stopped breathing. I was
treated at Great Ormond Street Hospital and in 1979 underwent open
heart surgery to repair the hole in my heart and also rebuild my heart
valve. Luckily I survived. I know I was one of few at that time.
16
I lead a completely normal childhood. I did all kinds of sports; I rode horses,
I went skiing and never gave my condition or scar a second thought.
Unfortunately, at university when I was 21, I became ill and was told my
mitral valve had a severe leak and I needed more surgery. The operation
was a success but going through this as an adult was very different to
going through it as a child. Only those who have gone through something
like it, can understand the physical and emotional toll it takes.
I know too that the journey with my scars may not be over and I could
need further surgery in years to come. I can’t deny that this doesn’t terrify
me, as it does, but you can’t live your life according to what might happen
only what has, and so far I have survived.
“I could need further surgery in
years to come. I can’t deny that this
doesn’t terrify me.”
Before he was born, David was diagnosed with Unbalanced
Atrioventricular Septal Defect and Coarctation of Aorta. He had
his first operation at 12 days old. At two years old, David was in
intensive care for 11 weeks and had three open heart surgeries
during that time.
David has an artificial mitral valve. This might last for 10 years,
but he will then need to have further replacements as he grows.
The other valves in his heart are being closely monitored at the
moment, as they may also need to be replaced or repaired as he
gets older. He will require lifelong specialist care.
Our new Scarred FOR Life photography exhibition features just a few
of the hundreds of thousands of congenital heart patients who are
living today. However it doesn’t tell the full story.
Participants are showing photographs of themselves during their
childhood. Together with their scars, viewers can perhaps guess a little
of the difficulties and challenges that these people faced when they
At the touch of a button...
first came into the world. What isn’t clear is the degree of trauma; the
intensity of the interventions; the stress and anxiety that must have
been so keenly felt by immediate and wider family and friends.
That is why we are so grateful to David’s family for sharing a glimpse
into their world and their fight against congenital heart disease. This
start in life has been shared by the vast majority of patients who were
born with a heart condition.
The pictures of David as a new-born child also emphasise the idea of
new beginnings. This concept is crucial to The Somerville Foundation.
We are determined that our research partnerships mark a new start in
the fight against congenital heart defects. We have seen patients’ lives
cut tragically short as a result of their illness.
Our work will benefit adults and young people here and now and
should ensure that as David grows and matures in the future he
too will benefit from our work today.
17
Heart Hero
Awards
We are delighted that Jenny Kumar, one of the three volunteers who
produced the original Scarred FOR Life exhibition in Scotland, has
been nominated for an award and is one of the two finalists in her
category.
The BHF Heart Heroes Influencing Award 2016 winner will be
announced at the BHF Conference in Glasgow on 21st June 2016.
Jenny is the third member of the Scarred FOR Life project team to be
nominated for a Heart Hero Award, with both Caroline Wilson and
Liza Morton being previous winners.
The Scarred FOR Life exhibition was first displayed in the Central
Hall of Glasgow’s prestigious Kelvingrove Art Gallery & Museum in
February 2015. Since then it has travelled around Scotland, including
a stint at the Scottish Parliament, and also made it to our Annual
Conference in Bristol last year.
Jenny, Caroline and Liza continue to raise awareness of the unique
needs of adults with congenital heart disease and The Somerville
Foundation.
We wish Jenny the very best of luck.
Spot the Difference
Challenge yourself with our Spot the Difference competition and be in with a chance of
winning a fabulous prize!
You could treat yourself this summer with a £25 Boots voucher if you are our lucky winner.
Annual Conference
2016
Book Online Now!
www.thesf.org.uk/conference-2016
You are most welcome to join us in September at our Annual
Conference, this year being held in Leicester on Saturday
17th September 2016. Enjoy an interesting, informative
and empowering day of presentations around living with a
congenital heart condition and managing your health. The
speakers are all experts in GUCH medicine from Glenfield
Hospital, Leicester. The Conference is Free of Charge for
patients, friends and relatives and for professionals with an
interest in GUCH medicine. If you have any special access
needs we’d be very happy to help, please let us know by
contacting the office on 01473 252007 (as far as you can in
advance so that we can get everything sorted for you). If you
are really struggling financially we have grants available that
can help with travel costs.
Entering is easy! Just find the five differences between the two pictures below, circle them and send (or scan!) to [email protected], or
alternatively send to our head office.
The winner will be selected at random from all correct entries received by 30th
August 2016. We reserve the right to substitute prizes for those of equal or higher
value where necessary.
Good Luck!
Congratulations...
Congratulations to Elaine Hadfield who correctly spotted five differences in our
competition last issue, and was selected at random from all of our correct entries,
winning the £25 B&Q gift voucher!
It’s good
to talk...
You will of course be free to attend as many of the talks as you
wish. A quiet room will be available if you want to spend some
time relaxing.
Caroline Wilson
Jenny Kumar
Dr Liza Morton
Photo: Herald and Times Scotland
Here to Help...
For those of you who want to stay after the conference there
will be an informal dinner* in the evening at the conference
venue (*you must pre-book – this is a chargeable event).
Feedback from previous events has been very good.
“Just want to say thank you for the wonderful conference.
It was very informative and lovely meeting up with friends
I haven’t seen for years. It was also nice to meet lots of new
people, who I will hopefully meet again. Looking forward to
the next one.” Karen Hallwood
“I have to say - my eighth conference BEST EVER! Thanks to
everyone who made it possible.” Vicki Hendry
Supporting young people and
adults born with a heart condition
Want to talk?
We’re here to listen
0800 854 759
or email [email protected]
18
Monday - Friday
Answerphone available out of hours.
SUPPORTED BY
“It’s great to get up to date information and catch up with
other likeminded CHD members.” Anonymous
“I think my favourite thing about the conference is that it
reminds me that I’m not alone in having a heart condition.”
Anonymous
Conference places are limited. To book your place, go to
www.thesf.org.uk/conference-2016.
We hope to see you in September!
Join our
Facebook Group
http://bit.ly/ThesfFBgroup
19
Supporting young people
and
adults born with a heart
condition
Want to talk?
We’re here to listen
0800 854 759
or email [email protected]
g.uk
Monday - Friday
Answerphone available out
of hours.
Are yo
Follow u a Tweeth
ear
u
info, u s for the l t?
at
p
more! dates, news est
We ar
e @_t and
hesf
SUPPORTED BY
www.thesf.org.uk
Registered Charity No. 1138
088
Join our mailin
g list today
and receive GU
CH News FREE
straight to your
inbox. Send
your email addr
ess to
[email protected]
g.uk requesting
e-news.
Born with a he
art
condition? Con
nect
with others on
our
messageboard
forum.thesf.o
rg.uk
or Facebook
group
http://bit.ly/The
sfFBgroup
The smallest amou
nts can
make a big differenc
e. If you
can, please donate
to us today
to help us continu
e the work
we do for adults
born with
heart conditions. Vi
sit our
website or give us
a ring for
more info on easy
ways to
support us.
Supporting young people and adults
born with a heart condition
GUCH NEWS
How to contact us
www.thes
f.org.uk
Our webs
ite is pac
ked
full with
info, advic
e
and suppo
rt. Have a
browse an
d see wha
t
we can do
for
you...
!!!!!!!!!
!!!!!!!!!
!!!!!!!!!
Head office
Saracens House
25 St Margarets Green
Ipswich
IP4 2BN
Tel: 01473 252007
Email: [email protected]
National Director
John Richardson
Tel: 01473 252007
Email: [email protected]
!
GUCH Ne
w s is g o in
g d ig it a l
in 2 0 17 . M
ake sure
we
have your
e m a il a d d
ress
before th
e s w it c h
so you
c o n t in u e
t o r e c e iv e
your
copy on t
im e .
!!!!!!!!!
!!!!!!!!!
!!!!!!!!!
!
find us?
Where did you
how you
Let us know
ith us. It’s
got involved w
ow what
helpful to kn
working, and
promotion is
so interested
we are always
r stories!
to hear membe
If yo
u’d lik
e to s
hare a
with
us in
story
a futu
re iss
GUCH
ue of
News
then d
– get
on’t b
in tou
e shy
ch! Y
ou ca
yours
n writ
elf or
e
we ca
n team
up wi
th on
y
ou
e of o
ur fri
suppo
e
ndly,
rtive w
riters
who c
help y
ou sh
an
ine.
Mental Health Support Worker
Anne Crump
Tel: 0208 240 1165
Email: [email protected]
Editor of GUCH News
Helen Barker
Tel: 01473 252007
Email: [email protected]
Visit us at www.thesf.org.uk
For information, help and support, phone
our free helpline on
0800 854 759
or email us at
[email protected]
If you would like to receive your copy
of GUCH News on audio cassette, CD, in
Braille or straight to your email inbox,
please contact Head Office.
Your right to reply: if you would like to
respond to any of the items in GUCH News,
please write to the editor, care of
Head office, or email
[email protected]
Editor > Helen Barker
Policy team > Michael Cumper, Fiona
Kennedy, Richard Bird
Proof readers > Anna Suchocki
Writers > Helen Barker, John Richardson
Design > Footsteps Design
Printed by > The Five Castles Press
With thanks to everyone who contributed
their time, energy, skill, stories and
experience.