ECHO Newsletter Summer 2012 - Evelina Children's Heart ...

ECHO Newsletter Issue 65
Newsletter
Summer 2012
Inside this edition: Meet our new members of staff | Safe and Sustainable decision announced – how it
will affect your family | Dr Owen Miller becomes ECHO Patron!
ECHO FAMILY DAY
On Saturday 16th June we held our
fourth ECHO Family Day at the Grange
City Hotel in London, overlooking the
Tower of London.
The event was attended by over sixty
families. Members enjoyed informative
presentations, a delicious lunch followed
by afternoon workshops and a
wonderful three course evening meal.
The children were kept busy and
entertained all day and evening! It was
a fantastic event and gave members the
opportunity to learn, share experiences
with other families and socialise in a
lovely setting.
The highlight of the day for many was
Hannah Phillips's amazing one-woman
show Hannah's Heart Beat. Turn to
page 22 to read Hannah's story, so far!
We would like to thank Dr Owen Miller
and Monica McCaffrey for their
interesting and informative
presentations. Also we would like to
thank the four workshop facilitators:
Suzie Hutchinson, Michelle Miles,
Louise Derbyshire and Monica who
very kindly gave a presentation and a
workshop!
Finally, thank you to Amanda Pipe and
her team Creche on Location for
keeping the under-fives happy. Clare
Perrett and many volunteers from the
Evelina who looked after the six to ten
year olds and took them on an exciting
trip to London zoo for most of the day!
Jon Brunskill, the Youth Leader for Little
Hearts Matter, gave a huge amount of
assistance, not only in planning and
organising activities and an outing for
the ETC gang, but also in running the
day. He, along with Olivia Hutchinson
and Rich Wilson,
plus some
volunteers from
the Evelina, gave
the teens a
wonderful day to
remember! To
read more
about the day
from Rachel
Ward, an ETC
member, turn
to page 23.
Jessica
Cattermole
Wheldal kids
Turn to pages 22 and 23 to read the latest ETC news!
Main photo: Valentina See pages 6-9
ECHO member Jodie Mills with
Dr Owen Miller
Nathan with Obama
ECHO (Evelina Children's Heart Organisation Ltd) is a registered charity, no. 1146494.
Registered as a company limited by guarantee in England and Wales, no. 7867592.
All correspondence PO Box 597, Chatham, ME4 9DS. Registered Address 145 – 157 St John Street, London, EC1V 4PW

CONTENTS
ECHO NEWS
ECHO NEWS
Page 2-5 ECHO News
Page 6-9 Valentina's story
Page 10 Milestones
Page 11-13 Hospital news
Page 14-21 Fundraising
Page 22-23 ETC news
Page 24 ECHO Contact details
Coffee morning in Brighton
New Area Contact Nicki Morgan is holding
a coffee morning at her home in Brighton
on Tuesday 16th October. For more details
please email Becky at Becky@echoevelina.org.uk
Christmas Party
The ECHO Christmas party will be on
Sunday 9th December, please keep the
date free, and more information will be
sent to you in November.
Coffee morning in Lewisham
Area Contact for London, Eleanor Beardsley,
will be holding a coffee morning at her
home in Lewisham on Wednesday 12
September 10am - midday. Please contact
her on south.london@echo-evelina.org.uk
for more details.
Get together in Gillingham
Monday 20th August, 10.30am - 12.30pm.
All members invited to FUN DRUM an
indoor children’s play area. Please contact
Emma Orpin on or at admin@echoevelina.org.uk
for more details.
Fundraising Bag Pack in Chatham
Emma Orpin is holding a Fundraising Bag
Pack at Asda Superstore Chatham, Friday
24th August, 11am–
4pm. Email
admin@echoevelina.org.uk
if
you would like to
help!
Dates for
your Diary
AREA CONTACTS
NEW SUSSEX AREA CONTACT
Sadly I need to pass on my 'Area Contact for Sussex' role, but I have
found a wonderful member Nicki Morgan to take over. Nicki came to my
last coffee morning, heard me talking about needing to pass on the role,
and kindly offered to take over!
Hi, I'm Nicki and I live in Brighton with my husband Mark and our two
children, Joe and Finley.
Finley was born in June 2011, and had open heart surgery when he was
4 months old to repair a large VSD, PDA
and Aortic co-arctation, just a week after
being diagnosed. He is now doing really
well and smiling again!
Nicki
I look forward to welcoming new ECHO
members in the Sussex Area and invite
existing and new members to the next
coffee morning on Tuesday 16th
October in Brighton.
For details about Nicki's coffee
morning please contact Becky.
I would like to thank Rosie Wheldal for sharing the role of
Area Contact for Sussex with me for so many years and for
her help in supporting so many members.
WE ARE LOOKING FOR A NEW AREA
CONTACTS FOR KENT AND NORFOLK
Fran Wintour has been Area Contact for Kent for many years. We are
looking to replace her with preferably two Area Contacts, to share the
role, as it is such a large area with so many members! We would like
to say a huge thank you to Fran for all the support she has offered to
members in Kent over the last few years.
Molly Crisp has also been Area Contact for a few years so we would
like to thank her for her help in supporting members in Norfolk. If you
live in Norfolk and would like to take over from Molly, then please
contact Becky for more details.
If you would like to become Area Contact for Kent or Norfolk, please
contact Becky for more details. The role is very rewarding and does not
require too much of your time. It involves welcoming new members by
email or phone (details of new members will be passed on to you by
Emma) and it is good to hold a coffee morning twice a year so that
local members get the opportunity to meet each other.
Jessica Cattermole
Please make sure we have an up-to-date email address for you to
ensure you get all our email updates and invitations.
Send to Emma Orpin on admin@echo-evelina.org.uk
INTRODUCING EMMA
Hi, everyone – I’m Emma Orpin and I am the
Administrative Assistant for the ECHO team.
My nephew was diagnosed with TGA at his
22 week anomaly scan and my sister and
her husband had to go through the very
difficult and challenging situation of facing a
life saving operation on their small son. They were extremely
Emma and her
sister Jodie
grateful for the support that ECHO provided them during that
time, and since, and this role felt like the perfect way to give
something back to ECHO and use my skills to help other families
in similar circumstances.
My role is to provide high quality administrative support to Jo,
Becky and the other members of the ECHO team. I hope that the
work that I do can make a difference to other families when they
need it.
My entire working career has been in the NHS working for local
organisations in Kent, and I continue to work for the NHS on a
part time basis as well as working for ECHO. I am married with
three children and a step son so I have plenty to keep me
occupied. In what free time I have, I
enjoy reading, the cinema and
walking but I am also part of a
mums Street Dancing group! My
usual working hours will be 9 - 3
Monday to Wednesday and you
can reach me on 07715208077
or emma@echo-evelina.org.uk.
GOODBYE FROM JESSICA
Emma’s family
I would like to take this opportunity to say thank you to all the lovely
ECHO members that I have worked with over the last eight years. I
have thoroughly enjoyed meeting so many of you, offering support to
you and putting you in contact with other members. Having the
opportunity to meet so many of you at the Summer and Christmas
ECHO events is always very rewarding and it has been great to see
so many of you getting so much out of being part of ECHO.
New contact details for ECHO!
To contact Becky:
becky@echo-evelina.org.uk or
call 07730 146154
To contact Emma:
admin@echo-evelina.org.uk or call
07715 208077
NEW ECHO STAFF!!
INTRODUCING BECKY
I am delighted and honoured to be the
new ECHO Membership Services
Manager. Our family have been
members of ECHO for over 8 years since
one of our twin daughters was diagnosed
with TAPVD. Until 2004, we had no idea how people cope
when their child faces life-saving surgery. It was the very most
frightening time and we were given tremendous support at Guys
and at the Ronald McDonald House where we stayed. I didn’t
look back much initially but when I dared to do so, I knew that
the people we met along the way would always remain dear to
me.
For me, being at an ECHO event means being with people who
know this often tough experience and so immediately you’re on
a similar wavelength and amongst friends. In my work I will
continue to offer these opportunities to everyone at ECHO and so
feel free to contact me with your ideas and hopes for ECHO
events.
My work before children was in financial services, for a regional
development agency and as a lobbyist in Brussels. Amongst
other things, I have been a school governor, helper at my church
and twins club newsletter editor since
becoming a mum. Currently I’m also
a Brownie leader and always enjoy
any opportunity to be with my
family out and about in the
beautiful Hertfordshire countryside.
My usual working hours will be 9
‘til 3 Monday to Wednesday and
Fridays and you can reach me on
07730 146 154 or becky@echoevelina.org.uk
Francesca and Josephine
I will miss working with Jo and the ECHO
team, and for all of you, but you will be
sure to still see me and my family at
ECHO events, my children will make sure
that we still attend them all!
Love to you all. Jessica x
Becky works 9am-3pm Monday to Wednesday and Friday
Emma works 9am-3pm Monday to Wednesday
The new PO Box address for all
donations/fundraising/membership forms:
ECHO, PO Box 597,
Chatham ME4 9DS
Becky
Jessica and family
Evelina Children’s Heart Organisation 03
Summer 2012

ECHO NEWS
ECHO NEWS
RAYS OF SUNSHINE
GRACE MALPASS
Royal Albert Hall
Rays of
Sunshine
contacted
ECHO in May
to offer some
of our ECHO
family
members’ a
limited number
of tickets for
their Royal
Albert Hall
concert this
year. What a
lovely
opportunity!
I don’t
know
which one
of us was most excited
about the Rays of Sunshine tickets
when they arrived just before half term. My 8
year old daughter Francesca and I were
thrilled to receive our tickets and the
excitement only grew stronger in the run up
to the big day. On arrival, Francesca was
delighted to be given her light-up wand and
flag and then to choose her raffle bears. Even
before all the performances began, Francesca
and I loved the wow of the Royal Albert Hall
experience.
Elliott Collict
It is a little tricky to say ‘what was our
favourite moment?’ at the June 7th Rays of
Sunshine concert.
Was it the moment that Leona Lewis was
showered with glittery pink confetti-like paper
or was it when Spelbound made one of their
amazing dance performances? Or could it
have been when the hosts Miss FM’s Melvin
Odom and Rochelle Wiseman from The
Saturdays invited some children on to the
stage?
Liz Quinnell told us “Thank you so much to
ECHO for the tickets to the rays of sunshine
concert. Thomas had an amazing time. He
loved all the acts & JLS are his favourite group
& they were even better than he had
imagined. Leigh went with him & also really
enjoyed it although I think he felt rather
old!!!! Thanks again.”
“It was a great evening and one we’re
extremely proud of! “ said Katie Clark, Wish
Manager at Rays of Sunshine, a charity and
friend of ECHO which grants wishes for
seriously ill children and teenagers in the UK
aged 3 – 18.
Sophie Bartlett was also lucky to receive
tickets and took her Dad along “Thanks so
much for the concert tickets. I loved it (and I
think Dad liked it too!). My faves were Conor
Maynard, JLS and Pixie Lott. Thanks again, x”
The journey up to town for Claire Collict and
her son Elliott started from Polegate midafternoon.
After their train and several notably
exciting trips in the train station lifts, they had
arrived at the Royal Albert Hall, got their
wand, raffle ticket bear and were making
friends with Jason and his Mum. Claire
explained to ECHO “Jason has been suffering
from cancer and has a brain tumour plus
other complications. Jason was absolutely
adorable and Elliott and him really hit it off
and had the same type of daft humour!” For
Claire, the artists were brilliant, “Elliott loved
Pixie Lott, he now loves Stooshe and is always
singing their song, Black heart, and of course
JLS” Although by the end of their performance
both Jason and Elliott were very tired and had
to sit on their Mum’s laps. Elliott and his Mum
want to say a huge thank you to all the
organisers, the artists and especially Rays of
Sunshine for giving the children such a lovely
time, it was truly appreciated.
Francesca and I sat and danced alongside
Karen Stuart and her son James. We
agree with Karen that it was “a fantastic
evening, albeit a really late one!” The music,
the performances were all stunning and I
think Francesca’s favourite has to be
Spelbound. I thought Pixie Lott was terrific and
Leona Lewis gave the most wonderful
performance too. Thank you Rays of
Sunshine for a most lovely memorable
musical experience.
Becky Kelway
Thomas Quinnell
James Stuart
ECHO member Grace Malpass was born
with Tricuspid Atresia. Grace featured in a
previous ECHO newsletter when, in 2009
she got married and her and her husband
asked guests to donate to ECHO in lieu of
wedding gifts and donated £800. In
March she wrote me this lovely letter:
I wanted to write as I feel strongly that some
parents of children with heart conditions and
adult congenital patients may need some hope
and inspiration.
Grace, Jon and Charlie at
Charlie's baptism
I was always told that I
would never be able
to have children due
to my heart
condition. I was told
that I would find it
almost impossible
to fall pregnant
and should I ever
fall pregnant that
the baby would
not survive due
to the very low
oxygen levels
Each year, between 5,000
and 6,000 babies are born
with a heart condition in this
country. Whilst some of those
(up to 35%) would have been
diagnosed during pregnancy,
the majority won’t be until after birth. For some
of these babies, the fact that there is something
seriously wrong with them will be obvious quite
quickly and, hopefully, staff in the maternity unit
will recognise the symptoms and the baby will
be speedily referred to an expert Cardiology unit
for assessment and treatment. For others, they
will remain reasonably well just after birth and
present with no obvious symptoms or signs
before being discharged from the maternity unit
with their unsuspecting parents.
The baby might not show any really obvious
signs at first, but may be slightly sleepy and slow
to feed with very slow weight gain (or even some
weight loss). Their hands and feet might feel
slightly cold to the touch and they may look a
grey, dusky colour. These signs may be
particularly difficult to pick up for first-time
parents, who don’t have other “healthy” children
to compare their baby with, and sadly, all too
often, GP’s, community midwives, health visitors
and even doctors in Emergency departments
also fail to pick up on the fact that a baby has a
heart condition which, if left undiagnosed and
treated, could ultimately (and quite quickly)
become fatal. We frequently hear from parents
whose new baby hasn’t been quite right, but
they’ve been fobbed off with a diagnosis of a
that my body runs on. Because of this, I would
not be able to support fetal growth.
So my husband and I were shocked when in
January 2010, I discovered I was pregnant. Sadly,
this pregnancy did not last and we carried on
with our lives thinking it was just a freak thing to
happen. We started the adoption process and
were looking forward to having a family in some
way. Imagine our surprise when I discovered I
was pregnant again! Once again, we found out
too late to offer maximum support to the baby
(ie changing my medications, and taking things
easy) and we lost this pregancy early on too.
However, I am now delighted to tell you that last
year I fell pregnant again and we now have a
beautiful, happy healthy 4 month old son called
Charlie.
I am writing to you as even though it was a
rocky road to have our boy, I wanted to inspire
others not to give up. There is still little
understood about the long-term lives of people
with congenital heart conditions. Indeed I believe
I am amongst one of the 1st generations to
survive my particular condition into adulthood.
When I fell pregnant with Charlie, I gave up
work, adjusted my medications to "safe" ones
“THINK HEART” CAMPAIGN
cold, chest infection or even just being tired,
and it’s not at all unusual for parents to be
accused of being overly anxious about
something which is “nothing” only to find their
baby being retrieved and blue-lighted into the
Evelina days or even hours later, critically ill and
fighting for life.
During Children’s Heart Week in May this year,
Children’s Heart Federation (CHF) launched their
“Think HEART” campaign to raise awareness of
the signs and symptoms of congenital heart
disease, particularly in newborn babies . The
campaign aims to make GP’s, clinicians, health
visitors, midwives and nurses in the local
community more aware of what to look out for in
a newborn infant and also to empower parents
with the knowledge to enable them to be able to
press for the investigations and treatment that
their child may need urgently.
Think HEART:
• Heart rate - too fast or
slow? (normally 100 to
160 beats per minute)
• Energy & Eating -
sleepy, quiet, too
tired to eat, falling
asleep during feeds?
and went on
oxygen 24
hours a day.
All of these
things had
no hard evidence
that it would help my baby to
survive, in fact, my cardiac obstetrician said that
having oxygen wont make any difference at all. I
don't know if it helped or not (it only increased
my O2 levels by a few %), but I was willing to try
anything and now I have my baby.
Grace as a toddler
The medics that look after us heart patients are
absolutely wonderful and extremely skilled and
knowlegable, but some things are about more
than medicine. We all know as heart patients
that hope and faith, and the love and support of
our family are key to surviving congenital heart
problems. They are also key to living a happy
and fulfilled life. Never give up hope, and don't
always take no for an answer! I just have to look
into my baby's eyes to know that miracles can
happen, even in the most unlikely places.
Kind Regards, Grace Bevan (was Malpass)
Congratulations Grace and thank you for sharing
this wonderful news with us!
• Arterial Saturation - a
blue, dusky or grey
colour (normal oxygen
saturations 95-100%)?
• Respiration - breathing
too fast or slow?
(normally 40-60 breaths
per minute)
• Temperature - cold to
touch - particularly
hands and feet
ECHO fully supports this campaign and is doing
all we can to promote the message, so if you
would like to do your bit and get involved,
leaflets and posters are available directly from
CHF, which you can distribute to your local GP
surgery, Children’s Centre, Schools, local hospital
and anywhere else you can think of where the
health professionals there might come into
contact with a baby with a potential cardiac
condition.
Please contact Danny Beales at CHF on
dannyb@chfed.org.uk for more information and
to order an awareness pack. For more
information about the campaign in general and
the work CHF do, please visit their website:
www.chfed.org.uk. Jo Wilson
04 Evelina Children’s Heart Organisation
Summer 2012
Evelina Children’s Heart Organisation 05
Summer 2012

ECHO VALENTINA’S STORY
ECHO VALENTINA’S STORY
Valentina’s story
I fell pregnant with Valentina quickly, we had only been trying for
about 6 weeks and Matt and I stared with shock and surprise at the 3
positive pregnancy tests one Saturday morning in early October 2011.
I had no indication that I was pregnant, apart from slightly sore
breasts, physically I felt the same, I suffered no morning sickness at
all throughout the pregnancy, but for some reason I just knew that
something was different.
We were both thrilled to have a baby on the
way, and the first 20 weeks of my pregnancy
passed in a blissful haze, I was feeling great,
really enjoying being pregnant, it was the
perfect pregnancy.
On 19 January we went along to Eastbourne
DGH for my 20 week scan, our only worry was
making sure we did not find out what the sex
of the baby was, we wanted it to be a surprise.
The fact that this was a scan to check for
anomalies hadn’t really registered, we just
assumed everything would be ok.
Our sonographer Bob started the scan and
pretty quickly we sensed that something was
not right. Bob was scanning the baby’s head
and told us that he thought there was
excessive fluid on the brain, our hearts sank.
My stomach just became a knot and I was
trying really hard to keep control and not just
burst into tears. Then Bob scanned the heart
and spent a long time over this particular area.
My world just crumbled when he said that he
was pretty certain there was an anomaly with
the heart, and he went off to try and find a
specialist who could confirm his findings.
Unfortunately the doctor we needed to see was
off that day, and we were advised that Miss
Sinah could see us on the Friday at the
Conquest in Hastings.
We were taken to a side room where a lovely
lady called Sabine spoke to us about what was
happening, she did her best to try and reassure
and comfort us, however I was
hysterical at this point. I could not believe how
things had changed in the space of 30
minutes, and was struggling to comprehend
what we had been told. Matt was being strong,
telling me we must wait until we had seen the
specialist at the Conquest, that we needed to
fully understand what the problems were.
We went back to Matt’s parents straight from
the hospital and I was inconsolable, just crying
and hugging my tummy. The evening passed in
a daze as we told my parents and Matt’s sister
the news. The next day we tried in vain to get
a private appointment with a specialist, and
were told that the earliest we could see
someone was Friday. We therefore had to just
wait. It was the longest 24 hours I had ever
waited.
We saw Miss Sinah at the Conquest on the
Friday and she confirmed that there was
definitely a problem with the baby’s heart, and
we needed to be referred to the Evelina
Children’s Hospital ASAP. She said that there
was a small amount of excess fluid on the
brain - but she maintained throughout the
pregnancy that this was not an issue. She told
us the heart was the main area of concern,
and an appointment was made for the
Monday up at the Evelina.
Matt and I set off for London from Eastbourne
on Monday, with his parents who had come
along to support us. My Mum also travelled to
London and we arrived en mass for the first of
many echocardiograms. The scan seemed to
take forever, and the wait that we had to
endure while the doctors studied the images
seemed to take forever.
Finally we all were taken into a small room
where we all squeezed together on the sofa
and 2 chairs, and Dr Sharland confirmed that
our baby had a large Ventricular Septum Defect
(VSD) and a Coarctation of the Aorta. She said
that we were very lucky that the sonographer in
Eastbourne had picked up on the anomalies,
and more importantly, she said that they were
treatable. At this point I felt a small amount of
relief, but when Dr Sharland went on to explain
that our baby would need open heart surgery
within 48hrs of birth, followed by weeks in
hospital, my world just fell apart. To make
matters worse, we were also advised that it
would be wise for me to have an
amniocentesis to check that the heart problems
were not linked to any other syndromes such
as Downs, and an appointment was made for
me that afternoon.
As Matt walked me down the corridor to have
the amnio test, I said to him that I wanted to
find out what sex the baby was - I don’t know
why but I just needed to know if it was a boy or
a girl, I just couldn’t go on thinking of it as “it”
when we knew it had these problems. Matt
said whatever I wanted to do was ok with him,
and we were told that we were having a girl.
When we walked back into the room and told
our parents that the baby was a little girl,
everyone cried. At that point I just had this
overwhelming urge to protect my little girl, and I
just knew she would be a fighter, she would
have to be.
We left via the main entrance to St Thomas’s, all
of us huddled together, upset and trying to
digest the news. We were just outside the front
of the hospital when Matt’s Mum collapsed
clutching her head, crying out in pain. It was
almost farcical how difficult it was to find a
doctor at that point, a passer by suggested we
called 999! Matt went into work mode, being a
Policeman meant that he had undertaken first
aid training, and he got his Mum into the
recovery position while his Dad found someone
who could help. Matt’s poor Mum ended up
staying in St Thomas’s for nearly a week as the
stress of the days events had triggered a
cardiac surge – a massive rush of blood to the
head which had made her collapse.
Poor Matt was torn between worrying about
me and the baby, and worrying about his Mum
who he had to leave in London. Having
travelled up together as a family, we had to go
home alone leaving his Mum in St Thomas’s –
miles away from home. Thankfully she made a
full recovery.
We were told it could take up to 3 weeks for the
amnio test results to come back, and I have to
say these were some of the darkest days of my
life. I was signed off work and spent my days
trying not to think about the test results, but in
reality it was all I could think about. Matt
banned me from using the internet as I was
upsetting myself looking at various syndromes
and diseases that we didn’t even know our little
girl had, I was just trying to prepare myself for
the worst. I kept thinking over and over in my
head, why us?…was it my age (37), was it my
lifestyle, working long hours, commuting to the
city….was I to blame? The doctors had told us
that it was just a case of Mother Nature getting
it wrong, but I still felt responsible.
Every time the baby kicked, every day that
passed, I was more and more aware that this
was my daughter inside me, a little person. At
24 weeks pregnant, the thought of having to
terminate the pregnancy was too horrific to
contemplate. I began to try and switch off my
feelings, not wanting to talk to my baby, afraid
of connecting with her any more than I already
had, as it would only make things harder if the
amnio tests came back showing there was
something wrong. Matt’s birthday came and
went, we just were consumed with worry and
every day I watched my phone like a hawk,
praying for it to ring with news, but also
dreading the call at the same time.
We got the call we were waiting for on the way
back from Brighton, we were in the waiting
room at Lewes Station when Sabine called to
say that the amnio came back negative, our
baby was fine apart from the heart problems. It
was rush hour and in the middle of the waiting
room Matt and I sank to our knees and cried
our eyes out on the sofa. It was the best news
ever. We knew that we still had a tough journey
ahead but this was such a positive moment
and from that day onwards, we were
determined to try and enjoy the pregnancy as
much as possible.
We began talking about names for the baby,
and I had read in a magazine about an actress
who had called her little girl Valentina. I thought
it was beautiful. When I googled it, I discovered
that it was Italian, and it meant strong and
healthy. That seemed like a good omen. Then I
had a scan on Valentines Day, and it was the
first scan for weeks that we walked out of
having been told no more bad news, our little
girl was in fact doing well, growing nicely, and
Miss Sinah was happy with her progress. This
made the name all the more appropriate.
I was scanned regularly both at the Conquest
in Hastings and the Evelina, and each trip to
London became a family outing, with Matt’s
parents and my Mum or my Dad coming up to
support us. Both hospitals got used to 5 of us
turning up for the scans, they were very
accommodating. We just had to be quiet!
At around 32 weeks I was told that I should
have an MRI of the baby so that they could see
what was happening with the fluid on the
brain. This had always been an area of slight
confusion as Miss Sinah always maintained
that this was not an issue, yes there was fluid
there, but it had not changed during the
pregnancy and it was only just over the
“normal” level. The MRI was undertaken at St
Thomas’s, and was a very uncomfortable
procedure, lying on your back for a long period
of time when heavily pregnant is not easy.
There was another 2 week wait for results, and
I was on the train home from work when I got
a call telling me that there was a large amount
of fluid on our little girl’s brain, but at this stage
they couldn’t really say what this would mean.
We would need to wait and see how she
developed. I was devastated; I felt like the
scan had been worthless as we were no
further forward, if it was a case of wait and
see, why go through all this pain and worry
now, so far into my pregnancy. It just seemed
unnecessary. Matt continued to be wonderfully
positive, saying that until we actually knew
what we were dealing with, he was not going
to let the thought of “what ifs” get us down.
There were days when his positivity used to
irritate me, I could not understand how he
could be so positive. It is only now that I realise
he had to be positive, it was the only way to
keep us both going, anything else and I would
have sunk into the depths of despair. He really
was my rock during those dark days.
We were told that the baby would need to be
delivered at St Thomas’s at 38 weeks, and we
attended an antenatal day at St Thomas’s
which was run by ECHO, which went over what
we could expect on the day of our baby’s birth.
It was here that we met other families all
expecting babies who had cardiac problems. It
was a humbling day, and as we left that room
we realised that our baby’s’ problems were
actually rather straight forward compared to
what some of the other parents were facing.
We had never heard of conditions such as
Tetralogy of Fallot, or Hypo plastic Left Heart.
We went home that night feeling very drained.
We were now part of a world we had never
really knew existed. Why would we know about
these things? Looking around that room, at the
mix of people, all of different ages, different
races, I realised that no one is spared from
Mother Nature.
There were so many sad stories in that room,
but also there was so much hope, and so
many brave parents who were all facing very
tough times ahead. It felt strangely comforting
to know that we were not alone.
My waters broke the morning I was due to call
the hospital to find out if they had a bed for
Valentina in neo-natal; luckily they were ready
for us. We arrived at St Thomas’s about 4pm
and Valentina arrived at 8.51am on Monday 23
May weighing 3.53kg, after 2 epidurals and a
spinal block for me, and 2 failed ventouse
attempts for Valentina. Unfortunately Valentina
had turned around and was back to back - she
managed to get herself well and truly stuck.
The ventouse cap ripped off a chunk of poor
Valentina’s skin on her forehead and her scalp,
and when they tried it again, more of the same
happened. In the end she had to be delivered
by a specialist using Kielland Forceps, and after
all the trauma in theatre she was rushed away
to Neo Natal where she was placed on a
Prostin drip. This kept the ductus arteriosus
blood vessel in her heart open, until such time
that she had her surgery.
Originally the surgery was planned to take
place within 48 hours of Valentina’s birth, but
due to the damage to her head from the
delivery, the surgeons were not prepared to
operate on her until her head had healed
sufficiently. This was a massive blow to us, and
it was awful to see the state poor Valentina
was in. She was in tremendous discomfort from
the delivery and was on round the clock pain
relief. It was several days before I could even
pick her up, and all I wanted to do was to hold
my baby. This was so difficult for me, I was
unable to try breastfeeding or enjoy skin-to-skin
contact. Hugs with her were precious and very
few and far between in those first few days.
Valentina finally had her operation on June 1st,
when she was 9 days old. We arrived on the
ward at 6am so that we could bathe her and
get some much-needed cuddles before taking
her down to theatre. She had a slight
temperature that morning but thankfully it was
not high enough to stop the surgery. We got
the call at 8.30, and I carried her down
wrapped in her pink blanket. Matt and I placed
her on the operating table and were there to
give her a kiss before watching her go to sleep.
Walking away and leaving her was the hardest
thing we have ever had to do. We had made a
pact not to cry in the theatre room and I was
struggling to keep my part of the deal. We both
made it out of the room and by the time we
reached the lift we were both in pieces.
The next 5 hours dragged and dragged. We
walked along the Thames and on the way back
we got the call from Mr Salir, Valentina’s
surgeon. The operation had gone well, they
had repaired the Coarctation and patched up
the hole in her heart. We could go to PICU in an
hour once she was out of recovery.
Seeing Valentina in PICU was scary. We had
been shown pictures beforehand so we had an
idea what to expect, but it was still a sight I will
never forget. She was surrounded by 6 or 7
doctors and there were lines and drains
coming out all over her. As we would come to
learn, this is normal for PICU when a baby
comes out of surgery, but at the time it was
very scary.
06 Evelina Children’s Heart Organisation
Summer 2012
Evelina Children’s Heart Organisation 07
Summer 2012

ECHO VALENTINA’S STORY
ECHO VALENTINA’S STORY
Valentina had 3 days in PICU, her chest drain
came out on day 2 but she did not come off the
ventilator until day 3 as she had been a little
slow at breathing for herself and the alarm on
the ventilator kept going off, not very reassuring
for anxious Mum and Dad at her
bedside! By the end of day 3 she looked like a
different baby, the only tubes remaining were
her nasal gastric (NG) tube, and a line in her
arm and groin. Picking her up was much
easier now, I remember the first cuddle I had
when she was still on the ventilator and I was
just petrified I would pull one of the drains or
that one of the lines would catch on something,
it felt so awkward. Her surgeon checked on
her and was pleased with her recovery, fingers
crossed she would be back on the ward the
next day.
Thankfully Valentina came out of PICU and
back up to Savannah on Saturday 4th June,
she looked so much better now the bloating
from the ventilator had subsided. That night
she gave us a scare, going blue and dropping
her sats to 80. She was given oxygen and
morphine as the nurses suspected she was in
pain following the operation, and they
managed to find her a baby airbed to make
her extra comfortable. It definitely helped, and
to this day we say she is like the Princess and
the Pea, she definitely likes a comfortable
bed!!!
In total Valentina spent 10 days on Savannah
Ward following her release from PICU. The
main issues for us were feeding and weight
gain. She was too small and weak to
breastfeed, although thankfully I was
successfully expressing milk which was mainly
being fed via the NG tube. She just tired so
easily when we tried to bottle-feed her, and we
could not take her home until a better feeding
routine had been established. Over the 10 days
in Savannah the grandparents were finally able
to cuddle their granddaughter, she had been in
such a state following her birth that Mum and
Dad hardly had any cuddles, never mind the
rest of the family. Needless to say there were
lots of happy Grandparents once they had all
had a cuddle.
During this time Valentina was also seen and
tested by the genetics department, as there
were concerns that her heart problems could
be genetic; thankfully her tests came back
showing she was a normal female. We also
saw a neurologist who suggested an MRI scan
could be beneficial in order to establish exactly
what was happening with the fluid on her
brain. The MRI attempt had to be aborted, as
Valentina would not lie still enough for the scan
to be effective. This is something that will need
to be done when she is older, at around 2
years old, so that the neurologists can get a
good understanding of what is going on in her
brain. In the meantime we have to wait and
see how her development progresses. The
early signs were good, but we were told it was
too soon to know what impact the surgery and
the fluid on the brain would have on our
darling girl.
We were discharged from Evelina on my
birthday, 13 June, to the Eastbourne District
General Hospital (DGH). I was scared to leave
the cocoon of the Evelina with Valentina,
uncertain of what the DGH would be like
compared to the top class care Valentina had
received at the Evelina. We had been lucky
enough to stay at the wonderful, amazing
Ronald MacDonald house for the entire length
of our stay at Evelina; I can honestly say I do
not know what we would have done or how
we would have coped without our room there.
The nurses who met us at Eastbourne could not
have been more welcoming, they very kindly
gave Valentina her own room which we very
quickly made our own. I slept every night at the
hospital, doing the feeds round the clock, with
the nurses very kindly doing the 3am feed each
night so that I could get some sleep. Matt also
did a fair share of night shifts during the 3
weeks that Valentina was in Eastbourne, he
was so hands on and really wanted to bond
with Valentina, which was amazing.
We had to be shown how to feed Valentina
using the NG tube as her weight gain was
painfully slow, and the bottle feeds were still
slow progress. After 3 weeks in Eastbourne we
were finally able to take Valentina home, she
still had the NG tube in but under the watchful
eye of the dietician and the Speech and
Language Therapist, we were allowed to take
her home as long as she kept improving with
her feeding. Finally walking into our house, over
5 weeks after her birth, was a massive
milestone for us. Over the next few months,
Valentina continued to put on weight and her
initial cardiac review back at Evelina was good.
We also saw the Neurologist in September and
he advised us that she was displaying all the
right signs for a baby of her age.
We had grown used to our baby’s foibles, the
way she used to sleep mid feed was the norm
for us, so was the length of time it used to take
to feed her – up to an hour for 3oz of milk. She
had always been like this so we never thought
much of it. Little did we know that around
where the patch had been placed over the hole
in her heart, her little heart had started to grow
excess muscle and scar tissue, which was now
blocking her aortic valve. We attended a routine
check up in October, making the family trek up
to Evelina, all of us breezing in thinking
everything was going to be ok again, only to be
left devastated by the news that she would
need another big operation, sooner rather than
later, to remove the excess tissue.
That night, I went in to check on Valentina and
looking at her sleeping, so peacefully and
unaware of what was coming, just broke my
heart. I sank to my knees by her cot and
sobbed my heart out. I just could not face the
prospect of her undergoing another operation,
and I could hardly bear to think about all the
stress and heartache that went along with it. I
practically kept Valentina under house arrest for
the few weeks leading up to her operation, not
wanting to risk her picking up any bugs that
might delay proceedings.
We arrived back at the Evelina on 14 November,
Valentina’s required an Echo before her
surgery, the plan was to do get this done
without sedation, however true to form our little
monkey would not lie still, and her cardiologist
Aaron Bell advised us that we would have to
return the next day for the Echo to be done
under sedation. We stayed the night in Gassiot
house, very kindly provided for us by ECHO,
and Valentina’s Echo was carried out without
any problems the next morning, confirming the
original diagnosis in October. We met with Mr
Salir, Valentina’s surgeon, and signed the
necessary consent forms, and were advised
Valentina was first on the operating schedule
for Wednesday; hopefully she would go down
to theatre at around 8am, which we were
pleased about as we just wanted it to be over
and done with so we could focus on her
recovery.
I stayed with Valentina on the ward that night,
hardly getting a wink of sleep in between the
night feeds which she still needed. We met her
anaesthetist at 7.30am and ran through what
was going to happen, bathed her in the
antiseptic wash and dressed her in her theatre
gown. The walk down to theatre is just the
longest walk, and I hate every step. Matt and I
showered her with kisses all the way to theatre,
and I held her while she was given gas and air
to make her sleepy. Typically her cannula had
not worked and she fought off the gas and air,
holding her breath and trying to wriggle out of
the mask, being the stubborn little fighter she
is. I was proud of her efforts! Walking away
from her again, leaving her in that room, took
super human effort. I could barely hold it
together. Matt propped me up as always,
telling me she was going to be fine, this was
what she needed to be healthy, and we had to
be strong for her. Of course he was right.
We got the call from Mr Salir at 12.15 to say the
surgery had gone well and we could come to
PICU in an hour to see her. On arrival in PICU,
we saw a group of doctor’s frantically working
on Valentina, and I felt a moment of pure
panic. We later learned that they were trying to
regulate Valentina’s heart rate as it was
beating too fast, and her blood pressure was
very low. Valentina was dressed in a white
“cool suit” to reduce her temperate and slow
down her heart rate, she had to have a blood
transfusion as she had lost a lot of blood out of
her chest drain. This all seemed really bad to
us, but thankfully Aaron Bell was close by and
re-assured us that this was all normal and we
should not worry, she was going to be ok.
We arrived back in PICU the next day, 17th
November, and learned that her blood test
results showed a big improvement compared
to the day before, the ventilator had been
turned down so that Valentina was doing most
of the breathing herself, and she was now on a
dopamine drip to assist with her low blood
pressure. Her chest drain was taken out and
she barely flinched when it was done, it was
incredible. We were so proud of her.
Over the next 24 hours her blood pressure
came back to normal and her heart started to
function more effectively, which was great
progress. She needed another blood
transfusion as her little body was working so
hard to mend itself and it just couldn’t make
enough new red blood cells. Throughout this
time Valentina showed what a tough little
fighter she is, getting so cross with the doctors
when they moved her to try and x-ray her chest
that her blood pressure shot up, and she
needed morphine to calm her down. That’s our
girl!
Valentina came off the ventilator on 18th
November, and having been on rations of milk,
she desperately wanted more milk which she
was not allowed to have. We had not weaned
her at this point, so she had a very rapid
introduction to solids that day. She either ate
the apple puree or went hungry….no surprises
which option she went for. It wasn’t quite the
introduction to food that I had planned, but
there you go! She had a bit if a temperature
which had been yo-yoing up and down over
the last 24 hours, and her blood infection
markers were up which was not a good sign.
Since she had been weaned off of the
morphine she had been much more awake
and fidgety, hence the decision to take her off
of the ventilator. By the 19th November, all her
long lines had been removed, but due to her
temperature she was now on antibiotics.
Poor Valentina now had some fluid on her
chest, and at this point we started to get quite
concerned. She had definitely taken a turn for
the worse, she had a developed a nasty chest
infection and was really quite poorly. She just
lay there, not moving, her eyes were sunken
and hollow. She looked worse now than when
she did after her operation. We were reassured
that she would start to make some
improvement once the anti-biotics kicked in. We
were worried sick, she looked dreadful. She
was so listless and unresponsive, it was a
really scary 24 hours for us. Thankfully the
antibiotics kicked in and on the Sunday
evening, 20th November, we left PICU and took
Valentina up to Savannah. That first night back
on the ward was one I will always remember.
My little girl, who is happy to be cuddled by
anyone and everyone, who has a strong
independent streak and likes her own time,
was suddenly really really clingy. She had this
panicked look on her face whenever she woke
up and she wanted me there next to her all the
time. I had never known her to be like this
before, she just looked really scared. I have
never felt the bond between us more strongly
than I did that night, bless her heart, she just
wanted her Mummy.
The next day we got our first smile from her
since Wednesday, 5 days prior. It was a very
welcome sight. Valentina was now on betablockers
to help her heart function properly,
and we were told she could be on these
indefinitely, it all depended how her heart
responded following the surgery. Due to the
obstruction in her heart, the bottom of her heart
had been working extra hard to pump the
blood through to the top chamber, and it had
become really big and muscly. The betablockers
were slowing down her heart, making
it fill up more effectively, and this would in time
shrink the heart back down to the appropriate
size. Now all we had to do was wait and see
how quickly it would get back to normal.
During our stay at Evelina the doctors had also
picked up on what appeared to be a squint in
her right eye. In addition to this she had
developed stridor breathing, which meant she
really sucked in her throat when she took a
breath at times, and snored terribly most of the
time. In addition to all this, the wounds on her
head that were inflicted during her delivery had
still not healed, and we were finally referred to
a dermatologist, and an ENT specialist for her
breathing, and also to the eye clinic.
Thankfully we have since been discharged from
all 3 clinics, after several trips up to London it
has been confirmed that she does not have a
squint, her vision is 20/20. ENT are not
concerned about the noisy breathing. She has
a floppy windpipe, which is quite possibly a
result of being intubated, and this is a condition
that she should just grow out of. The wounds
on her head are also now much better, she
was prescribed a powerful steroid cream from
the dermatologist, who actually asked for
pictures of Valentina at birth to use in teaching
cases, as her injuries were so bad.
We took Valentina home on Thursday 24
November. Once the antibiotics kicked in, the
change in Valentina was remarkable; we
definitely had our little girl back.
The relief we felt was palpable when we got
her home and tucked up into her cot that night.
It was another difficult phase of her life over
with. Now we need to wait and see how the
beta-blockers work. Her check ups in
December and April were very promising, the
heart muscle is getting smaller which is great
news. We felt sick with worry at these
appointments, terrified that we would get the
news that the blockage had come back, and I
think we will probably feel that way at every
check up; maybe it will get easier as time goes
by and her heart continues to remain healthy.
The changes in Valentina since her last
operation are so noticeable. She is a better
colour, peachy in fact! She feeds so much
faster, taking a bottle in minutes rather than an
hour. She is so much more responsive and
interactive. We had become so used to how
she used to be and accepted this as the norm,
it is only when we look back now that we
realise how poorly she was.
Valentina remains under the care of the
neurologist, and as far as her development is
concerned, we have to watch and see. She
celebrated her first birthday on 23 May, and
she is still not sitting up unaided yet. We do not
know at this point if this is related to the fluid on
the brain, or if she is simply just behind with
her development due to the operations and the
time she spent recovering. The neurologist
wants her to have an MRI scan when she is 2
so that they can determine whether there has
been any neurological impact as a result of her
surgeries in addition to the matter of the fluid
on her brain. She is very floppy which is a
possible side affect of the beta-blockers, and
she is also a rather skinny little rabbit, with a
small appetite, so building her strength up and
fattening her up is no easy task. She is to
receive some physiotherapy soon in the hope
that this will assist her sitting up. She is trying to
crawl which is interesting, and she really wants
to sit up she just can’t seem to get her balance
and stay rigid enough to do so. In the
meantime we are enjoying having her as a
baby for that bit longer.
Our darling Valentina is without doubt the
happiest, kindest, most loving and trusting
baby you could ever meet. Everyone who
meets her falls in love with her. We will never
ever be able to express to her how much we
love her and how proud we are of her after all
she has gone through. She has inspired us to
be strong, she has made us laugh, cry, and
worry, and we would do anything for her. She
is the most important thing in our lives and we
cannot wait to watch her grow up into a big
strong healthy girl. Lucy Crane
08 Evelina Children’s Heart Organisation
Summer 2012
Evelina Children’s Heart Organisation 09
Summer 2012

ECHO MILESTONES
ECHO HOSPITAL NEWS
This is your opportunity to share
your happy events and
children's milestones with us
all. Thank you to all of you who
sent in such lovely photos and
wonderful news.
Rachel Riley sent this beautiful photo of
her daughter Alexandra and said: "I
wanted to share with everyone that my
daughter Alexandra Dyer turned one on
13th June.
I just wanted to say "Happy first birthday
to our superstar. This time last year we
never imagined reaching this milestone.
She is so brave and a true blessing. You
make us smile every day."
Love Mummy, Daddy, Nickyle & Kyra
xxx
Neil Loughnane sent this fantastic photo
of his sons Thomas and Connor.
Thomas (Captain Hook) turned 5 on 13th
April and Connor (Peter Pan) celebrated
his third birthday on 15th June.
Thomas and Connor
Nick and Di de Naeyer's children Jack
and Alice went to their prom and Alice
wrote: "For our prom we got a coach
from our school in Totteridge, to Tower
Pier by the Tower of London. We got on
the boat there for our prom and during
our time on the boat it travelled down
the Thames, with Jack pointing out all
the attractions as we went past them. It
was such an amazing prom everyone
enjoyed it so much, I would love to do it
again." You both look fantastic!
Lucy and Paul Salmon's son Ashton
celebrated his third birthday on April
9th. He has also taken his first steps,
and grandad, Keith had his camera
ready! Well done Ashton!
This is a photo of ECHO member and
volunteer Julie Jackson's son Daniel at
his 10th birthday on Sunday 27th May.
To celebrate his birthday he had a
football party in the sunshine and then
party food with his friends. Sounds
great fun Daniel!
Kathy Turner sent this lovely
photo of her daughter Amy
in her first theatre
performance, "The
Wizard of Oz". She
was a robin!
Jessica
Cattermole
Alice and Jack
Ashton
Daniel
Amy
Alexandra
SAFE AND SUSTAINABLE – THE DECISION IS MADE
As most of you will have already seen and
heard in the news recently, the Joint Committee
of Primary Care Trusts (JCPCT) met in public on
the 4th July and made their decision on the
future of children's cardiac surgery we have all
been waiting for. This means that the number
of hospitals which can provide heart surgery for
children will be reduced from the current 11 to
7. The units which will retain their surgical
status are Evelina Children's Hospital, Great
Ormond Street, Southampton, Bristol,
Birmingham, Liverpool Alder Hey, and Freeman
Hospital in Newcastle.
The changes will have to be implemented by
2014, but at this time it is still unclear how soon
any of us will notice any difference (including to
those hospitals who will eventually be treating
more patients). ECHO has been closely involved
in the Safe and Sustainable process for many
years and has fully supported the drive to
reduce the number of units, thereby increasing
the size of the remaining hospitals undertaking
heart surgery, which we firmly believe will result
in an even better standard of care and safety
for all heart-children in the country, so we are
delighted that this pivotal decision has finally
been taken. We hope to be working closely
with the management team at the Evelina to
influence the work they undertake to expand
the cardiac unit there and also with the
Specialised Commissioning Group for London
and the South East to establish a seamless
“Children's Cardiac Network”, which will
encompass the Evelina's Outreach Clinics and
which will be key in providing care for children
with heart conditions close to their home.
The morning after the decision, we shared with
you by email a statement from Dr Owen Miller,
Head of Service/Clinical Lead for Paediatric
Cardiology at the Evelina. One of the key
messages from Dr Miller was “We look forward
to working with our network partners to ensure
a smooth transition to new ways of working”.
We anticipate that it will take some time to fully
understand the practical impact on us all. At
ECHO, we recognise that many of you will have
questions and in this section of the ECHO
newsletter, we will try to answer your questions
as much as we can over the coming months.
Here are a few we have already been asked:
Will appointments at outreach clinics change
as a result of this decision? Outreach clinics
will form a key part of the service offered to
support patients whose care is under the
Evelina, and the aim will be to form a
“Children’s Cardiac Network” amongst the
Outreach Clinics. Dr Miller explained in his
statement, “By working closely with local
hospitals to strengthen clinical networks, we
will also ensure [children and young people]
receive the best possible care close to home.”
We have always been patients at the Evelina;
does that mean we always will be? We live in
north London? This will not change. So-called
referral patterns may change for new patients
in the future but that has yet to be determined.
How will the Evelina cope with the increase
in patient numbers? The Evelina already has
robust plans to expand the Cardiac unit with
full backing from the Trust board. We will be
consulted throughout to ensure that we have
plenty of input and influence so we will
continue to push for sufficient, good quality
parent/family accommodation as well as all
the other services and support which are
necessary when one's child in hospital. All the
other units in the country which have been
designated as surgical centres will have had to
make a firm commitment to expansion too.
Also, it must be remembered that the changes
won't occur for at least 2 years, and there's lots
of work to be done in the meantime to ensure
a smooth transition and implementation.
How will this decision affect patient choice?
Patient choice remains a key component of the
NHS and the JCPCT decision should not affect
this important principle. Families and patients
will continue to have a say in deciding which
unit treats their child. The hope is that by
reducing the number of surgical centres and
concentrating skills and expertise, all the
hospitals providing children’s cardiac surgery in
this country will be world-class.
When will the Evelina start taking the patients
from the other hospitals? It is possible that
patient flow into the Evelina may increase
gradually and slowly at first over the coming
months as some families choose to have their
child treated at the Evelina even if other units
continue to offer cardiac surgery during the
implementation period. This will increase as
surgical services begin to wind down in those
units who will ultimately lose their surgical
designation. The changes will have to be
complete by April 2014.
If you have any questions, please send them to
becky@echo-evelina.org.uk and we will do
our utmost to clarify any areas of concern as
part of our regular liaison meetings with the
Evelina.
Holly Richardson aged 7, raised a fantastic £1,000 for the Evelina. Her mum
Frances Richardson said: "Holly raised the money by doing a sponsored swim at
Horsted Health Spa in Uckfield. She asked three of her friends to help her and together
they swam 6280m. She donated the money to the Evelina as she wanted to raise money for
children with poorly hearts like her brother Sam. We took Holly up to the Evelina in February so that she
could present Dr Owen Miller with the cheque. All of Holly's family and friends are very proud of her for
raising such a fantastic amount." Well done Holly!
THANK YOU
Dr Owen Miller
FRACP, FCSANZ, FRCPCH
We are delighted to
welcome Dr. Owen Miller as
Patron of our charity. Dr
Miller took over from
Professor Shakeel Qureshi
as Head of Service and
Clinical Lead for
Paediatric Cardiology at
the Evelina earlier this
year.
Dr Owen Miller attended the University of
Newcastle, NSW in Australia and trained in
Paediatrics at the Children’s Hospital in
Sydney.
After completing training in General
Paediatrics, he went on to complete specialist
training in Paediatric Intensive Care and then
Paediatric Cardiology. His postgraduate
training was in Sydney, Zurich and London.
His first consultant post in 1993 was to the
Children’s Hospital, Sydney, followed by
further training at Great Ormond Street,
returning to Sydney Children’s Hospital as a
Consultant in Paediatric and Fetal Cardiology
in 2000.
In 2005, Dr Miller was appointed to the
Evelina as a Consultant in Paediatric and Fetal
Cardiology moving to the current Evelina
Children’s Hospital when it opened in 2005.
Dr Miller’s main clinical interests are
advanced cardiac imaging, fetal cardiology
and cardio-pulmonary exercise testing. In
2012 he was appointed as Head of Service
for Paediatric and Fetal Cardiology.
Dr Miller is married with three children and
when not at work is passionate about sailing
and sailing boats.
We are looking forward to working closely
with Dr Miller during this time of change and
development in the world of Paediatric
Cardiology and to continuing the excellent
regular meetings which have become a vital
component in the liaison and collaboration
between the hospital and ECHO.
Owen, Sam and Holly
10 Evelina Children’s Heart Organisation
Summer 2012
Evelina Children’s Heart Organisation 11
Summer 2012

ECHO HOSPITAL NEWS
ECHO HOSPITAL NEWS
When I was pregnant with my eldest daughter
Melissa in 1994, I couldn’t wait to attend the
course of antenatal classes provided by the
hospital where she was going to be born. In fact
I was SO keen that I even went to another set of
classes given by the midwives at my GP practice.
It was such an exciting time – the anticipation of
entering the world of motherhood, making new
friends at the antenatal classes and learning all
the tools I would need to get my husband and I
through the early days and weeks with our new
baby. To this day, I still keep in contact with some
of the friends I made and we look back with
nostalgia at those heady days of planning,
reading “baby manuals”, buying baby clothes
and nursery furniture.
When I became pregnant for the second time,
five years later, I thought I’d be doing it all again
(although with the experience I’d already gained,
I would was looking forward to sharing my
knowledge as an “old hand”!). And then the
bombshell dropped… at my 20 week scan it was
discovered that my baby had a serious and
complex heart condition. The world as we knew
it shifted on its axis and everything changed. We
were no longer able to look forward with the
same excitement to our baby’s birth, and I was
definitely not going to go to a series of antenatal
classes and sit alongside mums who nothing
else to concern them apart from what sex their
baby was and what the latest buggy to buy was!
Every year, 5000 – 6000 babies are born in the
UK with a heart condition. On average, up to
35% of those babies will have been diagnosed
after a 20 week anomaly scan, and the
remainder will be diagnosed fairly soon after
birth, often in emergency circumstances. The fetal
cardiology service at Evelina Children’s Hospital is
one of the largest in the UK and internationally,
specialising in the diagnosis and management of
congenital heart disease before birth. This
includes structural heart defects, functional
abnormalities of the heart and rhythm
disturbances. The unit receives referrals from a
wide area, seeing patients from 50-60 different
obstetric units. Approximately 2000 pregnant
women are scanned each year and between 150
– 200 cases of fetal cardiac abnormalities are
diagnosed and managed per annum.
Six years ago we conceived the idea of holding a
special Antenatal Education Day with the aim of
providing a sort of one-stop condensed class for
parents who were expecting a “heart-baby” and
working in collaboration with Fetal Cardiology
and the Thames/Tower Team Specialist Midwives,
the first “ECHO Antenatal Education Day” was
held. ECHO sponsored the day by funding the
midwives to facilitate the class and also provided
lunch and refreshments throughout the day. I
went along to the inaugural class and sat in to
observe how it worked. I also did a short talk to
the parents at the end of the afternoon session
about my experiences with my own heart-baby
ECHO ANTENATAL CLASSES AT ST THOMAS’
SUPPORTING PARENTS THROUGH AN ANTENATAL DIAGNOSIS
as well as informing them about the support and
services ECHO provides. We were all a little
unsure of how these classes would be received
by parents… would they be well attended; would
parents find them useful; would the parents feel
more positive about their baby’s impending birth
if they went to one of the classes?
To this day, I can still remember how positive that
first class felt to observe. It was clear that the
parents there were really going to benefit from
the expert guidance the midwives were able to
give - just because they were expecting a baby
with a heart problem didn’t mean that they
should not be prepared properly for the baby’s
birth, to be informed about the benefits of and
techniques for breastfeeding, to understand the
different stages of labour and birth or how pain
relief would be able to help them through it if
they so chose. However, without doubt, the most
impact came from seeing the parents sit
together, getting comfort from knowing that they
weren’t going through the worry and fear about
their baby’s future alone and that others had
exactly the same emotions as them. Not only
that, but being able to listen to an experienced
parent speak about actually having had a baby
with a heart condition (or “one I made earlier” as
I jokingly referred to the photos I showed them of
my daughter Cissy) quite clearly made a big
difference to them all.
Manjit Randhawa, Matron and Lead Midwife for
the Thames/Tower Team at St Thomas’ was one
of the key people responsible for the introduction
of the classes and says that the midwifes have
always enjoyed facilitating the classes as they
really know it makes a difference to the patients’
journey and experience - there is always at least
one parent who says, “We thought we were the
only ones and felt so alone”. She continues, “The
feedback has been always been consistent in
that parents-to-be find the day very useful and
the most enjoyable parts of the day are without
doubt the tour of the neonatal unit and listening
and talking to the ECHO representative”.
From the positive feedback we had we knew the
classes had to become a regular feature and
over the past six years the ECHO Antenatal days
have become an integral part of the “care
pathway” which parents who are expecting a
baby with a heart condition can expect, and have
become a key part of the support which the
hospital and ECHO offers. We are able to work
with the Fetal Cardiology department to provide
support and friendship from the earliest days
after diagnosis for those parents who want it.
Sherrida Rollings, Nurse Counsellor in the Fetal
Cardiology Dept at the Evelina says “ECHO offers
invaluable support and information to parents
who have just been told that their unborn baby
has a heart problem. This is two-fold, with a
comprehensive rota, where specially trained
volunteers offer telephone and email support. All
newly diagnosed parents can contact someone
who knows what they are going through. The
specialist antenatal classes sponsored by ECHO
have also been a huge success, and are
extremely well evaluated. Not only do they
provide invaluable emotional support and
practical information, but parents are also able to
see the birth centre where their baby will be
born, and the neonatal unit where the baby will
be taken immediately after the delivery. Parents
also meet others at a similar stage of pregnancy,
and many will keep in contact and meet up
again after their babies are born. These classes
are open to all who are seen here with an
antenatal diagnosis, regardless of where they will
eventually deliver the baby.Both of these
resources can make a real difference in helping
parents come to terms with the often devastating
diagnosis of congenital heart disease.”
We estimate that up to six hundred parents have
attended an ECHO Antenatal Day over the past
few years and it is very gratifying to know that
they have been of real benefit, not only in
preparing parents for their baby’s birth and,
possibly, for surgery or intervention very shortly
after baby’s arrival but also that many great
friendships have begun at the classes, allowing
parents to support each other through the
inevitable ups and downs to come once their
baby arrives. ECHO member Caroline Jeal
remembers “My husband and I attended the
ECHO Antenatal day a couple of months before
our daughter Keira was born with TGA. We
arrived there feeling quite nervous and
apprehensive but we immediately felt at ease
when we got chatting to other parents and
realised we weren't alone. The midwives that ran
the group were so nice and very informative. This
was invaluable to us and we came away feeling
much more positive about the challenges ahead.
We are still in touch with other parents we met
that day and over the past couple of months our
children have all turned 3. We meet up regularly
and the children now look forward to seeing
each other as much as us parents do! It's great
to see them running around together, knowing
they have something very special in common. It's
thanks to ECHO running these antenatal days
that we all got to meet each other in the first
place.
Dr Gurleen Sharland, Consultant Fetal
Cardiologist at the Evelina says “As a fetal
cardiologist I often have to give bad news to
parents about their baby’s heart. They are
naturally devastated to hear that their baby has a
heart problem and may find it difficult to accept
or come to terms with this. Whilst we try and be
sensitive and supportive, there is no doubt in my
mind that the support and contact of members of
ECHO is invaluable to parents at what can be an
extremely emotional and distressing time and to
be able to give them the opportunity to attend an
ECHO Antenatal Day, to reinforce that they are
not alone and that other parents are going
through a similar situation can provide
tremendous encouragement and support. I
regard the work of ECHO as a very important
component of our prenatal cardiology service and
all parents should have the opportunity to access
this type of support when a prenatal diagnosis
has been made”.
Joanna Blewett volunteers to attend the Antenatal
days as an ECHO parent rep to share her
experiences of having a heart baby – “Although it
has been 3 years since my husband and I
attended the ECHO Antenatal day we can still
remember it as though it were yesterday. We
were very anxious and felt like the only expectant
parents to be having a heart child. The day was
extremely informative, hosted by the Tower
midwife team with a heart parent joining at the
ECHO member, Maxine
Reece tragically
passed away in April
this year. Her sister
Gemma has written
this lovely piece
about Maxine. Trish
Kenney and Eric
Rosenthal also
wanted to share
their memories of
Maxine. Maxine’s
family and friends
generously donated the amazing sum of
£2303 raised in memory of her, to be divided
between ECHO and the Evelina Children’s Heart
Fund
Maxine Reece
When Maxine was born in 1981 with complex,
inoperable congenital heart disease and doctors
told my parents that the outlook for their new
baby was not good, they could not have dared
to imagine the beautiful, successful and
independent woman their daughter was to
become.
To deny that it was a rocky road for my sister
would be to be untruthful. There were very
difficult times for us as a family, and many
challenges for her to overcome. Learning to live
with a life-threatening condition is the biggest
challenge of all. Yet Maxine, throughout the
course of her 30 years, showed that a sense of
humour, stoic determination and most of all, a
true love of life can be invaluable tools in
negotiating a path through the years.
At Guy’s Hospital as a teenager, she was a
smiling face on the paediatric ward and was
always visiting the babies to cheer her up during
long, painful stays. Her love of the little ones
developed into a career, when Maxine decided
to pursue childcare after leaving school. She
worked at children’s clubs and nurseries and
was fiercely proud of her commitment to
earning a living. It is testament to her work ethic
that, on receiving the doctor’s prognosis during
her final hospital stay, Maxine’s first words were:
end to tell you their story. It also gave us the
opportunity to meet with other parents in the
same situation as ourselves and made us feel
less isolated, less "different". This is why I
volunteered to take part in the days; to provide a
small insight into the life of a heart parent, to
share our experience and to show that there is
light at the end of the tunnel. As well as helping
other parents-to-be I found my first time
volunteering at an Antenatal Day really emotional;
the last time I'd been in that room I was sitting
there with all the fears and anxieties they now
felt. However, it also reinstated to me how far our
family had come. Giving up a few hours of my
time, I knew, had made the world of difference to
those soon to be parents and travelling home
that afternoon I was pleased to have given
something back to the heart community at a time
when they need it most.”
We are extremely proud of this groundbreaking
initiative which has, no doubt, made a huge
difference to so many parents at a time in their
lives when they may have felt isolated and
frightened about the future for them and their
unborn baby. We would like to see the day when
similar classes are offered to ALL parents who are
expecting a heart baby, no matter where they live
or where their baby will be born in England and
Wales!
JO WILSON
A LIFE LESS ORDINARY – MAXINE REECE
‘Will it affect my ability to work with the
children?’
Maxine’s true love was theatre and she was a
well-known amateur actress in her hometown,
Tring in Hertfordshire. Her performance of Alice
in the production of The Vicar of Dibley had the
audience in fits of laughter and will always be
remembered. In fact, Maxine was such a
prolific actress that we counted 28 shows in
which she had appeared over the years. She
loved the shows, the social side of the theatre,
the dressing up and the banter.
When Maxine passed away in April this year,
after becoming ill with unrelated bowel
problems and sadly not making it through the
three operations she underwent, a huge surge
of love and support poured forward from family
and friends. Maxine had become such a wellloved
face in Tring, that one friend remarked:
‘She was a huge part of our culture.’ As the
tributes poured in, one word kept appearing
over and over again: ‘inspirational.’ So many
people were touched by Maxine’s joie de vivre
in the face of adversity, that it seemed her
attitude had a lot to teach many of us in more
fortunate positions.
In turn, I hope that hearing about all the things
that Maxine had achieved can be inspiring for
you, too. Gemma Reece
Back in 1996 when Maxine was an inpatient, I
was one of the sisters on Rothschild ward. I was
sorry and sad when Eric told me that Maxine
had died. I immediately thought back to the
time when Maxine spent many weeks on
Rothschild and was very unwell. Maxine pulled
through after a lot of determination. I remember
Maxine’s mother Eileen, father Dave and sister
Gemma who all gave constant encouragement
to Maxine and were a positive and strong
family. As Maxine got better there was lots of
fun and laugher as Maxine had an amazing
character and humour. The other person I
remember was Grandma who used to arrive
with yummy home-made cakes.
I remember Maxine on other admissions before
she moved into the adult service - but Eric was
still her consultant and kept us informed of how
she was doing - getting a job, learning to drive
and getting a flat!! Maxine always loved the little
babies on the ward and I was not surprised
when she became a child care assistant. From
what I understand Maxine lived life to the full.
The Maxine I remember loved fashion, had a
beautiful smile and was lovely. My thoughts are
very much with the family. Trish Kenney,
Paediatric Cardiac Outreach Sister
Maxine was born with a double inlet left
ventricle and unfortunately despite palliation
with a duct ligation and pulmonary artery band
she developed early pulmonary vascular
disease that prevented her proceeding to a
Fontan operation. And as if the anatomical
problem was not enough her condition was
complicated by heart block requiring pacing
from an early age. She developed a serious
infection on her pacemaker lead and required
surgery and prolonged medical treatment to
cure it. With support from her family and the
nursing staff on Rothschild ward she maintained
her spirit through this exceptionally difficult time.
It was a privilege and a pleasure to look after
her for over 20 years and watch her grow from
a child, through adolescence into a mature and
independent adult. She coped admirably with
her condition and was very successful in leading
a full and productive life. Her e-mail alias
“mightymaxibaby” said it all! Her e-mails were
always interesting – even when not challenging
medical advice which she frequently did and her
visits were also highly anticipated.
The celebration of her life drew hundreds and
was a fitting tribute to her and of course her
family. She was one special girl and I will miss
her.
Eric Rosenthal, Consultant Paediatric & Adult
Congenital Cardiologist
12 Evelina Children’s Heart Organisation
Summer 2012
Evelina Children’s Heart Organisation 13
Summer 2012

ECHO FUNDRAISING
ECHO FUNDRAISING
Fundraising
Thank you to all our members
and their families and friends
who have continued to fundraise
and donate to ECHO over the
past few months. We have
received too many contributions
for me to be able to mention you
all, but here are a few I would
like to share with you.
Annie Gale's daughter Minnie
celebrated her 6th birthday and
donated sweetie money to ECHO! On
each party bag they put a little sticker to
say 'instead of having some extra
sweeties in your party bag, we have
given a bit of money to a charity called
ECHO, from you. This will help children
with poorly hearts. Thank you xxx'. Such
a wonderful idea, thank you to the
Gales for their donation of £40.
Thank you to friends and family of Violet
May Westover for their kind donations
totalling £200. Joan Westover arranged
donations to ECHO in memory of her
mother in law Violet.
James Hook
Thank you to the Hook family. In the
half term holiday James Hook, aged 12,
decided he wanted to hold a cake sale
to raise funds for ECHO, which he calls
'his charity'! Along with a friend, and his
brother William and sister Heidi-Louise,
they raised £200. James's mum Jane
writes: "James has HLHS and is doing
amazingly. He loves rugby and hockey
at school. He started senior school in
September and loves to get to school
early so he has more time to play
football with the year 11 boys!"
Elissa Holloway held a girls night at her
friend Caroline's house and raised
£320. They charged £10 per person
which included fizz and nibbles on
arrival and a two course dinner. They
sold raffle tickets for prizes donated by
local shops and restaurants and family
and friends, as well as ECHO teddies
and t-shirts. Elissa said: "We organised
a couple of silly games with more ECHO
teddies, badges and key rings as
winners prizes. We also put together a
great playlist so there was plenty of
dancing later too!" Thank you Elissa for
such a great fundraising idea!
Thank you to Martin Pavey who raised
£640 by holding a charity quiz night on
18th February at his local sports club
Crofton Albion. Martin writes: "The
evening was very well attended with
around 60 people forming 10 teams
battling to become the latest quiz
champs and take home bottles of wine
for the winners. Questions such as 'how
many hairs are there on the average
human adult body?' and 'Thomas
Wedder is attributed with the longest
nose at how many inches?' kept the
contestants on the edge of their
seats…. or was that just them straining
to get to the bar at the interval?!"
Thank you to Hayes School in Bromley,
for raising £101.73 during their
Dancefest.
Anwen Morris, friend of member
Magali Gauthier, raised £1043 for
ECHO. Magali writes: "Thanks to the
very generous donations from friends
and family, our friend Anwen Morris has
managed to raise over £1000 for ECHO
by running the Reading half-marathon
at the beginning of April. Her
determination and hard training paid off
as she completed the race in just over 2
hours. She is pictured here with our son
Samuel of 5 months who was born at
the Evelina in October 2011 and
underwent successful open heart
surgery to correct his TGA heart
condition at only a week old." Thank you
Anwen.
Anwen and Samuel
Thanks to Joyce Schofield for donating
£400 in lieu of gifts for her husband's
70th birthday.
Thank you to Bam Grey who celebrated
her 40th birthday this year and held a
party on 21st April. She asked for
donations to ECHO in lieu of gifts. She
has donated a fantastic £950!
Thank you to member Simon Baker
who raised £3,400 through raffle ticket
purchases, competition entries and
other donations at the South Coast Slam
at The Charmandean in Worthing .
Thank you to all the organisers for all
their hard work in making it such a
successful event.
David Stokes raised a fantastic
£2337.63. David writes: "Lifting a car for
charity with 6 weeks notice. I have finally
lost the plot, or have I????
As many of my friends, family and
colleagues know my world was blown
apart two years ago when Natalie and I
received the news that no parents
would want to hear. At our 21 week
scan, our unborn son was diagnosed
with a major heart defect and we were
sent immediately to the Evelina
children’s hospital for the first of what
would be many visits, unfortunately
Congenital heart disease was confirmed
and he was diagnosed with Tetralogy of
Fallot, a rare condition which would
require corrective surgery when he was
born.
Kai was born on the 23 March 2010 at
the Conquest Hospital by planned
caesarean section as the consultants
were unsure as to how Kai’s heart
would cope with a normal delivery. Kai
was transferred to the Evelina soon after
where he was given a thorough check
David
Kai
and given the all clear to come home
but would continue to be monitored with
a view to commence corrective surgery
once he had gained the required
weight.
When Kai was 8 months old and after
many appointments at the Evelina they
decided the time was right for his
surgery and on the 10 December 2010
he underwent successful open heart
surgery to correct his heart.
We all have a tendency to think we are
having a tough day or seen a few
challenges in our lives but this was the
hardest time of our lives and without the
Evelina Hospital, the amazing nurses,
consultants, surgeons and the support
of echo, I cannot begin to imagine
where we would be today and this is
the start of me trying to say thank you
for a service and gift money cannot buy.
So, all this considered am I really that
crazy to raise money for these people??
I don’t think so and I am training to lift a
car so don’t argue with me!"
David managed a total of 11 lifts in the
60 seconds. Well done David!!
Thanks to ECHO member and volunteer,
Debbie Houghton's daughter Charlotte
and her class Form 7N at Newstead
Woods School for Girls, for raising
£66.97 through holding a sponsored
silence. Charlotte recommended ECHO
as one of the charities to receive the
money raised. Debbie said: "Everyone in
her class did a sponsored silence for the
whole day (bet the teachers loved that)!"
Thank you also to Debbie's mum for her
kind donation of £25.
Sharne Kelly held a pamper
evening raising a fantastic
£1093.30 for ECHO. She said:
"The money was raised through
ticket sales, donations
from therapists and
raffle tickets. Defluo
plumbing and
drainage
sponsored the
event by providing
2 glasses of wine
for every ticket
brought." Thank
you Sharne.
Emma Orpin, our
lovely Admin Assistant's brother in law
Martyn Monk took part in the Three
Peak Challenge and raised a wonderful
£700 for ECHO. Thank you to Martyn
and his team: Adam Jamieson, Andrzej
Chec, Chris Hoskison, David Peters,
Simon Ashley and their driver Piers
Cooper
Martyn and his team
At the top!
And last, but by no means least, thank
you to Emily Ellis, Sister on Savannah,
and her friend Liz, who ran 10K on the
5th May and raised £440 for ECH0.
Thank you Emily and Liz!!
Jessica Cattermole
Bam Grey and
her boys
14 Evelina Children’s Heart Organisation
Summer 2012
Evelina Children’s Heart Organisation 15
Summer 2012

ECHO FUNDRAISING
ECHO FUNDRAISING
Fundraising
We had twelve runners take part in
the London Marathon on 22nd April
2012 using ECHO places and another
two runners who ran with their own
places. We also had a friend of a
member take part in the Brighton
Marathon the week before! Here are
some of their accounts of the day.
Nat Scott
Cree, ECHO
member and
father of Lucy,
ran for ECHO
with his brother
Paul. Nat
writes: "It was
their first
marathon and
after the long,
cold winter of
Nat and Paul training, a day
of glorious
sunshine welcomed them to Blackheath
for the start. Some four hours and fortythree
minutes later, they crossed the line
in Westminster, worse-for-wear, but in
one piece having resisted the
temptation to walk on several
occasions! It was a truly wonderful
experience and a great team of
supporters was there to cheer us the
last few hundred yards on Birdcage
Walk (including Lucy). A big thank you
to them! We had many generous
sponsors, and to date we have raised a
grand total of £3277.74, with donations
still trickling in."
ECHO Member, Steve Caine writes:
"Thanks for giving me a place to run. It
was amazing and even more so as I
have raised just under £3000 for ECHO."
ECHO Member David Paling writes: "I
ran this years marathon to raise money
for ECHO as it is such a great
organisation. We (my wife and I) have
been members for several years now
since my
eldest son
Sebastian was
born with TGA
in 2004.
Sebastian was
very excited
about me
running and
often asked if I
thought I'd
win! I'm not
Steve Caine really a runner
so started my
training last summer starting at about 4
mile runs and gradually building up in
the lead up to the big day. What a
fantastic day it was, hats off to the
organisers for it all going so smoothly.
The spectators were great and the
many comments about the 118 tache
(dyed red) I'd grown for the run and all
the other encouragement really helped
and added to the whole atmosphere. I
saw my family twice, once at Canary
Wharf where I still felt reasonably fresh
and then again near Westminster by
which point it was getting very painful,
in fact the last six miles were painful but
I was determined not to stop or walk. I
completed the run in 4hrs 14 mins which
I was very happy with and even better
David with Thomas and Sebastian
Meet Our
Marathon
Runners!!
than that I have so far raised over
£2,700 with more still owed. Meeting
my family at the end was such a good
feeling and I even managed a couple of
pints after stretching off. I'm so glad I
managed to raise the money for ECHO
and give something back for all the help
they have given to us and others. By the
way the moustache came off that night."
Nev Niyazi, friend of ECHO member
Grant Taylor, and his friend Ben O'shea,
both ran for ECHO. Nev writes: "Running
the London Marathon was not only a
personal ambition of mine but also an
opportunity for me to raise money for a
worthy cause. Echo is particularly
important to me as it helped my very
close friends when their son, Charlie,
who was diagnosed and treated for
severe heart defects. Fortunately, Charlie
is now a happy, healthy, amazing 5 year
old boy but I know that they all
benefitted greatly from the support of
this amazing charity. So when the
opportunity arose and Grant said that I
may be able to run for ECHO I was
thrilled. Before I knew it myself and Ben
were signed up and the training was
under way. Come race day and meeting
some of the other echo runners before
and during the race really added to the
electric atmosphere created by the
thousands who lined the streets.
However, the only downside to the day
was that I missed selection for team GB
for this year's Olympics by 2 and a half
hours. Never mind better luck next time.
:)"
Greg Edwards, whose niece Charlotte is
treated at the Evelina writes: "The
Marathon was a truly amazing
experience. I can’t really describe the
feeling of being a part of such a
prestigious event and being able to
raise money for such a worthy cause.
There was a point before the marathon
where I thought that I would be unable
to run. Three days before the event I
had bronchitis and my doctor advised
me not to run. I thought I would rest up
and see how I felt on the day. When I
started the race I didn’t feel 100% and so
I decided to take it slow and just try to
enjoy the experience. I’m really glad I
did as I was able to take in the whole
atmosphere of the day. It was tough at
times and there were occasions that I
thought I may have to drop out, but the
crowd cheering my name really lifted
me during the tough times and I was
able to push on. I also had some friends
and family with me who I saw every few
miles after the halfway point and my
wife and daughter were waiting for me
at mile 24, my daughter had a banner
that said “Run daddy run! I think
knowing that they were waiting for me
is what got me to the finish in the end.
I managed to finish in 4hrs 58mins,
which is about an hour outside what I
was aiming for, but I am very pleased to
have been given the opportunity to take
part.
I have managed to raise a total of
£2078."
ECHO member Ian Littlewood ran for
ECHO and has raised £5248 and his
friend Nick Ralph also ran, and raised
£2050. Ian writes: "I decided to run the
marathon to raise money for ECHO after
receiving such amazing care for my son,
Jude, when he was born with
Transposition of the Great Arteries (TGA)
in September last year. We knew about
his condition in advance so it seemed to
me like he would be born, whisked
away, fitted with a few tubes and given
some drugs which would stabilise him
for a few days. Then he would have an
operation that would fix him and we
would all live happily ever after. As it
turned out, things didn't quite go to plan
as Jude went downhill very quickly
when he was born. He had to have an
emergency balloon septostomy,
although this didn't quite go to plan
either. After the septostomy I went
down to see him in NICU but two
Doctors were in the middle of doing
something to him. The look on their
faces told me things weren't going well
at all. I said I would come back later
and wandered back to see my wife,
Deirdre, who was in recovery from her C
section. As I left NICU I felt sick. For the
next few hours we waited in the
recovery room together wondering what
was happening. I can't now remember
whether I told Deirdre the full extent of
what I felt seemed to be happening or if
I tried to protect her in the hope
everything would be OK. After what
seemed like an age we saw a Doctor
who explained part of what had
happened and that Jude was to be
transferred to PICU. We went down to
see him just before he went across to
PICU. It was the next day before I
discovered the full extent of what had
happened to Jude. He simply hadn't
been getting enough oxygen and each
of his organs began to shut down in
order. This culminated in his heart
stopping for some thirty seconds before
his was brought back to life by CPR.
"Just like on the telly" as Doctor
explained to me later. This also meant
that his brain was starved of oxygen for
half a minute. He slowly got better over
the next few days but then would have
little episodes where his blood oxygen
levels would drop suddenly. On Jude's
sixth day I woke up thinking that today
would be the day, even though it wasn't
planned to be. As it turned out I was
right. It was decided that the best
course of action given his circumstances
was to operate that day and that it was
to be that afternoon. I was quite
relieved that it would happen and just
wanted to get it over and done with. At
about 4 or 5 pm he was taken down to
surgery. Deirdre and I then went off to
have what we both hoped would be an
incredibly slow dinner. We received
probably the fastest dinner that Locale
have ever served. This left us at a bit of
a loose end for a while so we went and
had a coffee and a beer in the bar at
the Marriot. At about 9pm we
wandered slowly back to our room
in the Ronald McDonald House
within the Evelina. After only around
ten minutes we got the call from the
nurse at PICU that Jude was back
and that everything had gone well.
We raced up to see him. He looked
a bit puffy and remarkably similar to
some of the other post op pictures
I have seen in ECHO newsletters.
Over the next few days he got
stronger and the next step was
from him to be taken off his ventilator.
This also didn't go well at the first
attempt but he got there in the end. We
also spoke to a neurologist to discuss
the brain scan that Jude had had to see
what might have happened when he
was starved of oxygen. It turns out that
there was very little damage considering
what had happened but that bold truth
was that they didn't really know what
that would mean and we might not
know until he is much older. Not exactly
the black or white answer that we
wanted. There were quite a few other
ups and downs along the way but after
a month or so we got Jude home. He
seems to be developing "normally",
although perhaps a little behind which
is "normal" for what he went through.
Anyway, I digress, I was only going to
write a sentence or two about Jude to
give a little background... I have to
admit, part of the reason I wanted to do
the marathon was simply to feel just a
little of the pain that he must have gone
through. This was quite useful during
training as the sleet, snow and hail that
felt like daggers in my face during subzero
runs across Blackheath made me
feel good. It also meant that I was
never, ever going to stop or give up, just
like Jude didn't. I was also spurred on
by the incredibly generous donations
from friends and colleagues that were
mounting up on justgiving.
The day itself was a truly remarkable
experience that I would recommend to
anyone. To be
cheered on
by
random
strangers
over and
over again
really
Ian
Littlewood
with Jude
16 Evelina Children’s Heart Organisation
Summer 2012
Evelina Children’s Heart Organisation 17
Summer 2012

ECHO FUNDRAISING
ECHO FUNDRAISING
Ian and Nick
operations…..again reminding me that
not everyone is so fortunate. That said,
by working together like we did, vital
funds have been raised, hopefully
improving chances for others through
research, equipment and expertise."
ECHO member Simon Fricke writes:
"Choosing to run the London marathon
this year for ECHO was an easy
decision. My wife Alex and I had never
heard of ECHO until our baby daughter
Meredith was born in June last year.
Meredith was diagnosed with Wolff-
The marathon itself was nothing new to
me but it's always a challenge. I had
my cheer team at various points on the
course to help me along the way. My
parents have it down to an art now as I
see them at the 6, 14 and 21 mile
marks. I managed to glimpse Alex's
head above the crowd at Tower Bridge
but Meredith was unfortunately hidden.
Still, the thought of running for Meredith
and so many other babies and children
really kept me going."
Simon Openshaw completed marathon
in 4 hrs 40, and raised over £3,000.
Simon's son Sam was at the Evelina at
Alan
out! As you are aware I ran in memory
of Harrison Smith, when my knee was
causing me such pain I kept telling
myself it is nothing like the pain Caroline
and Jake have experienced over the last
year. This and seeing my family along
The Embankment at 24.5miles kept me
going. I can honestly say it is the most
physically demanding thing I have ever
done, but a truly amazing experience! I
actually saw Caroline's brother
(Harrison's uncle), Alan Border, before
we started, we hadn't arranged to meet
up so how amazing that we were
running for the same person and saw
each other for a chat! I have raised over
£1,100 for ECHO and have memories to
last me a lifetime!" Alan also raised over
£1,100!
Geoff Manns friend of members Karen
Beynon and Mandy Head, ran the
Brighton marathon on the 15th April and
raised over £800 for ECHO. Geoff writes:
"I originally applied for the Brighton
Marathon 2012 in May 2011, It’s funny
how the months race past and you
realize the reality sets in that you are
going to have to start some serious
training at least 4 months before The
Day.
Having only run a few 10k races (6.2
miles) to think of over 26 miles was
arduous to say the least. Training went
quite well by increasing my mileage by
an extra one each week. My worst
experience was running 15 miles and
getting home with pains below both
knees, even jumping up road curbs was
a struggle….only to be told by my 10
year old daughter. I will have to run
another 11 plus miles on the day. An
experienced running neighbor of mine
told me when I get to 20 miles in the
race you're about half way there!
Meaning the remaining 6 will be
tough…Sobering thought.
The day itself was great with amazing
support and a really good vibe around
the course. To see friends and family
around the route gives you a much
needed extra energy boost. I must
admit the last 6 miles were like running
in treacle, with your running shoes
scuffing on the road as you lose the
power to lift up your legs. The finishing
post was a great sight for my tired legs.
I finished the race in 3 hours 53 minutes
and 18 secs. I hope the money raised is
useful in many ways for this deserving
Charity".
Thank you Jo, Alan, Geoff and all of
our fantastic runners for choosing to
run for ECHO.
Ian Littlewood with Jude
helped a lot. I planned to get around
London in 4 hours and I did exactly that,
after a "sprint" over the last few hundred
metres meant that I crossed the line in
4.00.00. I waited for my friend Nick
who was also running for ECHO and
then we went for a drink and bite to eat
at the Marriot. Somehow, it seemed
appropriate." and Nick writes: "Your
experience put things into perspective
for me, especially in relation to the birth
of my baby daughter, Nina. Child birth
is not something that we should take for
granted, nor should we ever forget how
skilled and professional people are in
the NHS. Supporting you and Jude was
the least I could do. No matter how long
or painful. Throughout the marathon I
bumped into other runners supporting
ECHO, one with a story of on-going
Simon Fricke
Parkinson-White syndrome when she
was two weeks old after having spent
four days in intensive care at Kings
College Hospital. The Evelina Children's
Hospital took on the care of Meredith
and we have been provided with great
support by all the staff whenever we
have to stop by for check ups. We also
enjoyed the fantastic Christmas party
held at the Den and look forward to this
year when Meredith can explore a bit
more on her own. Raising the
sponsorship money was great fun. Alex
and I managed cake sales at both of
our offices which went down a storm.
Friends and family also gave generously
and the final tally will be around £2000.
Simon Openshaw
the time of the marathon, so Simon
returned to the hospital after the event
to see his family. Tragically Sam died on
the 18th May. Simon would like to say
thank you to everyone who sponsored
him and to everyone who has
supported them since Sam's death. Our
thoughts go out to Simon, Helen and
Izzy at this desperately sad time.
Thanks also to ECHO member Paul
White who also ran using an ECHO
place.
Jo Codling
Jo Codling ran with her own place, in
memory of ECHO members Caroline
and Jake Smith's son Harrison. Jo
writes: "I did it! It took me 4hrs 38mins, I
am pleased with my time as I had to
run with my knee strapped due to an
injury I picked up training. From 10miles
my knee was really unhappy, but there
was just no way I was going to drop
Geoff Manns
OUR MARATHON RUNNERS RAISED OVER £25,000!!!!
18 Evelina Children’s Heart Organisation
Summer 2012
Evelina Children’s Heart Organisation 19
Summer 2012

ECHO FUNDRAISING
ECHO FUNDRAISING
Fundraising
Our Son Ellis was born in January 2011 with
Transposition of the great arteries and was
treated and cared for at Evelina.
After some tough times Ellis has made a full
recovery and is now a bubbly and very
determined little toddler.
ANDREA DEANS FUNDRAISING
ECHO member Anna Campbell and Petts Wood Pavilion Preschool in Kent
raised over £1,400 for ECHO
We felt so grateful for our little miracle that we
like many before us decided to give
something back.
Fun and Games!
“Wheelie Fundraising Event” – over
£1,400 raised by little legs!
Zoe in the Evelina
Go Zoe!
On 23rd and 24th May, the Petts Wood
Pavilion Preschool in Kent raised over
£1,000 for ECHO. Each child was asked to
complete 8 laps of the bowling green by
form of a “wheel” (bike, scooter or
pushing a pram) and they were
sponsored by friends and family.
It was one of the hottest 2 days of the
year and despite the increasing red
cheeks, all the children took part and
completed the event. They got a sticker a
lap and then much deserved ice lollies!
This event happens annually and this year
the prechool kindly agreed to give the
proceeds to ECHO, as my daughter Zoe,
attends the school.
29 of my pregnancy. Being small for
dates, I was examined at Kings Hospital
and they diagnosed that our little girl had
“Tetralogy of Fallot’’. This is a congenital
heart defect where complete repair of four
areas of the heart is required, one of
which is more commonly known as a
“hole in the heart”. We were told that she
would need open heart surgery within
days of being born.
Zoe arrived three weeks early in St
Thomas Hospital by emergency
caesarean weighing a tiny 3lbs 11. All the
medical team were on standby but Zoe
showed us from the start what we now
recognise as her stubbornness and
determination. After a great deal of
scanning and examining they decided she
should get stronger before any further
intervention. So she came home three
weeks later but was regularly monitored
by the cardiologists at the Evelina’s
Children’s Hospital. It was a very nervous
time for us all.
At 10 months they decided that it was the
right time for Zoe to have major heart
surgery. We kissed our little girl good bye
and waited an agonising 5 hours. The
operation was successful but we had a
terrifying second night when we nearly
lost her. Two weeks later we were all back
home and trying to lead a normal life.
Zoe remembers nothing of course but it
took us, as parents, a little bit longer to
recover!
Zoe has since gone from strength to
strength. For a three year old she is still
very little but you wouldn’t know the start
she has had in life by just looking at her.
Her favourite game is running and she
can out run her daddy around the house!
It is amazing to watch after everything she
has been through.
Zoe will need further surgery later in life
and continues to have annual check- ups
but in the meantime I wanted to be able
to give something back to say “thank
you”. I do not feel I could ever do enough
to thank the Evelina Children Hospital and
ECHO for saving Zoe’s life and for helping
us as parents to cope with it all.
Thank you to the Petts Wood Pavilion
Preschool for helping to support this
charity.
Anna (Mummy to Zoe)
I started to raise money for ECHO by baking
some traditional slovak Christmas biscuits,
which was very successful.
I however had bigger things in mind and
started to organize a big summer event.
Ellis and Fearne
Whilst still in the planning phase I got to know
Michelle Kingston, who also lives in
Edenbridge. Michelle has little girl called
Fearne. Fearne has Hypoplastic left heart
syndrome and she has had norward
procedure stage 1&2 and waiting for stage 3.
She is doing really well.
Michelle and I started to organize our big
event which was challenging having never
done anything like this before; however we
had so much support and encouragement
from our friends and family and the event was
coming along nicely.
Fundraising face painting
Leading up to the event I did a fundraising
face painting at our local Rotary Fete raising
£130 and Ellis's nursery organized a
sponsored Dance and Wriggle which raised
amazing £790. I attended a number of Rotary
Club meetings; these taught me a great deal
about organizing an event and I was
overwhelmed by the support and
encouragement they gave me not to mention
their left over drink from their own summer
festival.
Our event took place on Sunday 8th July at
Crockham Hill Village Hall in Edenbridge Kent.
We had lots planned for the day, but
unfortunately the weather wasn't on our side.
The rain was relentless in the morning which
scrapped a number of my plans and
frightened off the Bouncy castle Company; we
had to improvise and fortunately the venue
had great indoor space.
Still the turn out was very good considering
the rain, Murray in the Wimbledon final and
the F1 Grand Prix. We sold about 120 adult
tickets and people seemed to enjoy
themselves. We had stalls selling lovely things,
lots of donated clothes, books, plants were
also sold. We had lovely cake stall which sold
out, face painting and a princess make over;
kids could also make paper hearts and forest
creatures, garden games and competitions for
kids and even welly wanging which was very
popular when the sun finally smiled down on
us.
We had live music playing all day including my
husband and neighbors doing their first public
guitar jam as well as 3 fantastic local bands;
this made a really nice atmosphere. The raffle
went really well we sold over 1000 tickets this
made all the relentless cold calling on local
shops and businesses worth while. Michelle
even got Peter Andre to donate a signed book
(we secretly hoped he might turn up but it
wasn't to be.
Over all on the day we collected just over
£3,000 which hugely exceeded our
expectations. Our friends and friends of
friends were incredibly supportive. On a
day like this you realize just how
important loyal and hard working your
closest friends are.
The fundraising doesn't stop there,
we still have money coming in
from people who couldn't make it
and also have been promised some
more form some businesses.
Our online donation is currently at £1,500, so
adding everything up we are hoping to reach
£5,000.
We still have ongoing fundraising activities like
Pampered Chef online, where you can shop
your quality kitchen products and 15% of every
purchase will go to ECHO.
If you would like to do some shopping just go
to
http://www.pamperedchef.biz/jobanks?page
=host-search-results&showId=3687321
We also have World War 2 military vehicle
driving experiences available, from which all
money will go to ECHO.
If anyone is interested in having a really good
day out exploring over 20 different vehicles,
have a ride in them, drive them and have bbq
on top, please let us know!
I would like to say a huge thank you to all who
came but most of all to those who helped to
make it happen, I could not do it without
them!
Andrea x
Ellis
My Story……..
Zoe’s condition was diagnosed at week
20 Evelina Children’s Heart Organisation
Summer 2012
The children having a well-earned rest!
ECHO member Andrea Deans is hoping to reach her target of
£5,000 through her fantastic fundraising events!!
Evelina Children’s Heart Organisation 21
Summer 2012

ECHO ETC NEWS
ECHO ETC NEWS
For
those of you who
may not have seen my previous
article or who don’t already know me, this is a
little bit about me. My name is Hannah Phillips
and I turned seventeen on the 23rd May. I
finished my GCSE’s last year and was very
pleased with my results; I am currently
studying Drama, Spanish, French and
Sociology at college. I enjoy cooking & I’m a
total chocaholic! I love acting and taking the
time to meet new people. Travelling and
learning new languages is my passion. I’m a
huge fan of charity work and will get involved
in any way that I can. I’m very girly, and love to
have a good time; I’m bubbly and (as you can
probably already tell) a huge chatterbox!
After being born three months premature, at
six months I was diagnosed with the heart
disease Ebstien’s anomaly. Since then, like
many other heart patients I have had several
operations and hospital visits over the years.
After surgery in 2008 I suffered from bad
arrhythmia problems and after three years of
trying to cope with it and trying out different
medications, we decided that a pacemaker
would be the best way forward; this was fitted
October last year.
When I was told that I was going to have a
pacemaker fitted I felt really unsure about
what it would be like and I really hated the fact
that this meant more surgery. I thought that it
would be nice to find a creative way of
preparing myself for surgery; however, I also
wanted to be able to help other heart patient’s
deal with the same pacemaker process.
With the help of the Evelina we came up with
the idea of creating a video diary of my
pacemaker journey. It shows the weeks
leading up to, during and after surgery. The
diary entries cover how I was feeling before,
during and after, the process as a whole, what
I did to keep calm and load more.
I found that doing the video really helped me
keep calm and remind myself of how it would
help me in the long run. I wanted the video to
have a greater impact and so I have been
working with The Evelina, who are editing the
video for me. This will be finished within the
next few weeks and be handed out to
hospitals, charities, organisations and
patients, across the UK (hopefully) and used
as a helpful resource for fellow pacemaker
HANNAH PHILLIPS
patients. It’s a way of showing that you’re
never alone!
Since having the pacemaker I have been
feeling more myself, I waited a long time to
have one implanted and so far I don’t regret it.
Like any teenager, I have my ups and downs
but over all I am happy with the result.
Over the past year and a half I have been
working closely with one of my mum’s friends
and together we have created a one woman
show, based around my life.
‘Hannah's Heart Beat’ is a poignant multicharacter
solo show based on Hannah's
experiences while living with a rare congenital
heart defect called Ebstein's anomaly. During
the 40 minute show, we journey with Hannah
and meet her mother, a proper South London
nurse, an American wedding planner,
insensitive classmate, a therapist and
Hannah's idol Jessie J. Interspersed between
these characters Hannah talks and sings
about her life experiences, we meet a
teenager who has integrity, a zest for living life
and a quirky sense of humour.
The ultimate aim of the show is to give people
like me and not like me a different perspective
of life. I want to be able to share my story and
what matters to me with the young and old.
The show was performed for the first time on
the 18th February in front of close friends and
family and is still a working progress, however,
will never really be ‘complete’ as my life is
forever changing. It was also performed on
the 25th May at a festival and the 16th June as
part of ECHO’s family fun day.
The response I got on the 16th June was over
whelming. I had so much fun performing at
the event, in front of parents and the ECHO
teen group. It was an amazing experience
and a huge opportunity given to me by ECHO,
which I am very grateful for. The feedback and
comments were very touching and a real eyeopener
for me as I was unsure as to how
people would react. Even so, I came away
having had a lot of fun but feeling that I’d
done some good and given a sense of ‘hope’
to people at the same time. Thank you to
ECHO for taking that project on board and
helping ‘Hannah’s Heart Beat’ grow that little
bit extra.
The show was performed on the 14th and 18th
July at The Evelina Children’s Hospital in the
Medi-Cinema.
You can keep up to date with my show by
liking our page on Facebook, just search for:
Hannah’s Heart Beat.
What’s next for me? After college I am taking a
gap year, I’m going to work at Disney land
California for six months and when that’s over,
I will be flying out to a third world country (still
undecided as to where)for eight months with
project trust, to volunteer in education and
health care for children. I hope to gain new
skills and experiences but not forgetting to
have fun and explore the world whilst as
much as I can. Depending on how that goes I
will then either go University or into
employment, however, that’s a little too far
ahead to think about now. Ha-ha.
Over the years I have learnt a great deal and
feel I’ve really grown as a person. I believe
that if you’re determined and work hard you
can achieve what you want no illness should
bully or stop you from doing what you want
and love.
There will be times were I feel like giving up or
wishing it would all go away, everyone has
those moments, of course we do (especially us
teens) but overall living with my condition has
given me such a different view of life and a
zest for living it to the full! Looking back over
the years, Ebstein’s Anomaly is something I
wouldn’t change about myself.
There are three sayings that I like to remember
and try my best to go by, they are as follows:
• Humour is just as important as
medication and surgeries
• “Be young, be foolish, but be happy”
• “Just be true to who you are”
I would love to hear from some of you, if you
wanted to get to know me more, ask about
the play and further updates regarding that or
simply just wanted a chat, I would be more
than happy to do so. Here is my E-mail;
hannahlouloute@yahoo.co.uk I hope to hear
from some of you soon, have a great summer,
and enjoy it while you can.
Hannah Phillips x
Rachel Ward
Joe Jackson and Lewis
Hamilton!
Saturday 16th
June was the
ECHO
conference
and family
day. For the
ECHO teen
club, it
was
basically
a fun
day out
but a good way to meet
new people, make
new
friends
and to
learn more
about how
to cope with
a heart
condition in
everyday life
as a teen.
We were put
into groups and
then started
with some ‘ice-breaker’ games. Our
group leader cut up a piece of fruit and
then we had to put it back together with
toothpicks – harder than it sounds… then
Morgan Hawkins, aged 11, took part in The Grand Hotel
Mini Mile Race and raised £120 for ECHO!
His mum Tracy Hawkins said: "My son
Morgan Hawkins participated in The Grand
Hotel Mini Mile Race. At two weeks old he
had to undergo corrective surgery, he was
born with TAPV (Total Anomalous Pulmonary
Venous Corrections). He is now a fit and
healthy 11 year old. He wanted to do the
race and collect
sponsorship for ECHO,
ETC MEMBER, RACHEL WARD, HAS WRITTEN THIS
GREAT REPORT ABOUT THE FAMILY DAY
we played a few rounds of hangman,
and then we played a weird murder
game, a really complicated version of
wink murder, but really fun.
During the day there was a girl called
Hannah, a 17 year old who came in and
performed some of her extracts from her
show, ‘Hannah’s Heartbeat’ She amazed
everyone, including the parents with her
confidence and talent, while teaching
everyone there a lot. She was a lot easier
to relate to because she was our age. It
was really useful and boosted a lot of
our confidences.
After lunch, we went to Madame
Tussaudes!! It was really fun! Especially
because hardly any of us had been there
before. We went round in small groups
and we saw everyone! It was amazing!
When we got back, some people went
home and some people stayed for
dinner. There was also a swimming pool
that some people used. The whole day
was really fun and really worth going! All
the people were really nice and made
the day more exciting.
Rachel Ward
A huge thank you goes to Merlin’s Magic Wand Charity who provided all
the tickets for the wonderful trip to Madame Tussauds free of charge!
as you had been a great help to us during
his stay at Guy's and he reads all the ECHO
newsletters and also thinks you do a
fantastic job. He managed to complete the
race in 9:28 and we are all very proud of
his achievement.
We thank you all for all your hard work and
the time that you give to so many parents
and children when they most need it. "
Nathan with David Cameron
Thank you Tracy
and thanks and
well done to
Morgan, what
an amazing
achievement!!
Volunteer Olivia
Morgan Hawkins
If you are over 11 and haven’t already joined ETC (ECHO Teen Club) then don’t delay, you might be
missing out! Email your name, date of birth, postal address, email address and mobile phone
number to Emma at emma@echo-evelina.org.uk or text/call 07715 208077 for more info!
22 Evelina Children’s Heart Organisation
Summer 2012
Evelina Children’s Heart Organisation 23
Summer 2012

KEEP IN CONTACT
Does ECHO have your email address?
Send it to Jessica on admin@echo-evelina.org.uk
AREA CONTACTS
AREA NAME TELEPHONE EMAIL
North London/Herts Mandy Webster 0208 202 0713 north@echo-evelina.org.uk
Diane de Naeyer 020 8441 3644 north.london.herts@echo-evelina.org.uk
East London/Essex Kerry Auger 01702 526 612 east.london.essex@echo-evelina.org.uk
South London Eleanor Beardsley 020 8690 6804 south.london@echo-evelina.org.uk
Kent Vacant kent@echo-evelina.org.uk
Sussex Nicki Morgan 01273 277 798 sussex@echo-evelina.org.uk
Suffolk Angela May 07789 390 594 suffolk@echo-evelina.org.uk
Surrey Kathy Turner 07792 349 780 surrey@echo-evelina.org.uk
Norfolk Vacant norfolk@echo-evelina.org.uk
Pre-natal Support via Admin Office 07715 208 177 prenatal@echo-evelina.org.uk
Bereavement Support Cathie Shipton Please contact Emma for Cathie's contact details'
THE ECHO COMMITTEE
NAME TELEPHONE EMAIL
DIRECTORS
Juno Hollyhock Chair 07742 532 973 juno@echo-evelina.org.uk
Richard Parsons Vice Chair 07976 839 303 richard@echo-evelina.org.uk
Joanne Williams Treasurer 07752 504 021 treasurer@echo-evelina.org.uk
Jane Ward Director Trustee 020 8655 0660 jane@echo-evelina.org.uk
Rowan Alston Director Trustee 07824 350 188 rowan@echo-evelina.org.uk
STAFF
Jo Wilson Chief Executive 07921 775 795 director@echo-evelina.org.uk
Becky Kelway Membership Services Manager 07730 146 154 becky@echo-evelina.org.uk
Emma Orpin Administration Assistant 07715 208 077 admin@echo-evelina.org.uk
COMMITTEE MEMBERS
Ben Wilkie 07944 849 137 ben@echo-evelina.org.uk
Dawn Matthews 07843 770 479 dawn@echo-evelina.org.uk
Nick de Naeyer 07889 570 784 nick@echo-evelina.org.uk
ECHO mobile 07715 208077
Don’t forget to let us (and the hospital) know of any change in your contact details, i.e. address, phone number, e-mail address
ECHO MEMBERSHIP FORM
Edited by Jessica Cattermole | Designed by Stanislaus Design Please email kstanislausdesign@yahoo.co.uk
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Would you like to be put in contact with other families in your local area? Yes No
To join ECHO, please complete the form
and return to Emma Orpin at:
ECHO
PO Box 597, Chatham ME4 9DS
Membership of ECHO is free, but if you
would like to make a donation, however
small, it would be gratefully received.
Address
Telephone
Child’s condition
Has he/she had surgery? Please give details
Postcode
Email address
In accordance with the 1998 data protection act, we will hold your details for membership communication purposes and to provide you with correspondence, invitations and
appeals. If you do not wish to receive these please contact admin@echo-evelina.org.uk. None of these details will ever be passed on to a third party.