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Brave Hearts Issue 7 Summer 2014

Registered charity number 1148359

Meet CHSF's new line-up PLUS: Wear Red Day photos â—? Ward 12 move


2 Contents

Children’s Heart Surgery Fund

Inside

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To submit stories and photos, or to subscribe, email bravehearts@ chsf.org.uk

Meet CHSF's new staff – fundraiser Alex & intern Lauren News – Leeds first to use pioneering new rhythm monitor Could you help by being a regional CHSF ambassador? Photo special looking back at Wear Red Day Be inspired by Ashleigh & Evan's stories Matron Heather Wardle on life on the wards Katie's Club – meet more heart heroes

Children's Heart Surgery Fund, registered charity number 1148359; company number 8152970. BraveHearts is written and produced by Zip Media & Communications (www. zipmedia.org.uk). BraveHearts is printed by Resource Print Solutions (www.resource-ps.co.uk).

Ashleigh Willetts braved the world's tallest bungee jump in Macau, China, to raise more than £1,600 for CHSF. Ashleigh, 22, was a patient at the LGI's heart unit, and she tells us her story – and all about her jump – on pages 14-15

HOW YOU CAN HELP TO FUNDRAISE...

● Call 0113 392 5093 ● Download our fundraiser registration form at www.chsf.org.uk ● Ask for a copy of our fundraising guide, packed full of tips and an A-Z of ideas – from abseiling to zumbathons!

TO DONATE...

● Call 0113 392 5742 ● Donate at www.chsf.org.uk ● Send a cheque made payable to "Children's Heart Surgery Fund" to CHSF, Room 003, B Floor, Brotherton Wing, Leeds General Infirmary, Leeds, LS1 3EX


Welcome 3

Visit us @ www.chsf.org.uk

Children’s Heart Surgery Fund Director Sharon Coyle on the charity's growth and the cardiac unit's ward move...

Bright future beckons for CHSF and LGI heart unit The new CHSF office address is Room 003, B Floor, Brotherton Wing, LGI, Leeds, LS1 3EX

Katie Bear with heart patient Georgia Ling, aged 8, on Wear Red Day. Turn to pages 10-11 to see photos from events across the region to celebrate CHSF's annual fundraising day

WELCOME to the latest issue of BraveHearts, which comes ● We're recruiting to our line-up of trustees, who are at one of the most exciting times in our charity's history. responsible for overseeing the running of the charity. Our focus this year is on growing the charity and the So, new beginnings and exciting times all round as both impact we have helping patients across our region – and the charity and the unit look to the future. we've got a lot of exciting new projects to tell And we're helping to shape the future of you about. This springtime really has been a congenital heart services across the country time for new beginnings: through NHS England's new national review. Ward L12 is ● Ward L12 is moving to Clarendon After years of campaigning against the flawed Wing, and we're contributing £30,000 to the moving... with original review, we are happy to report the new decoration of the fantastic new ward; process seems to be more positive so far and ● We've just furnished new parent CHSF spending a public consultation on new national service accommodation – seven ensuite rooms – in the standards is expected in the summer. We'll £30k on the Leeds General Infirmary's Brotherton Wing; continue to be closely involved. ● There are two new websites on the way can read more about all these projects fab new ward andYouchanges – due in the next month or so – one CHSF is in this issue. Also, we take a look funding for the heart unit, and also a revamp back at our fantastic Wear Red Day earlier this Sharon Cheng for our own website, www.chsf.org.uk; year, which raised an incredible £30,000; hear ● Our two new community fundraisers, more inspirational family stories; and interview Alex Green and Myriam Barker, have joined our team, as matron Heather Wardle about life in the unit. well as our new intern, Lauren Askey; Thank you so much for your continued support – we ● With our growing team, we've just moved to a new, couldn't do the work we do without the help of individual bigger office in Brotherton Wing; and corporate supporters like you. Enjoy the magazine!

“ ”

Our mascot Katie Bear

Working to help heart families

THE Children’s Heart Surgery Fund is a registered charity based at the Leeds General Infirmary. We fund vital equipment, resources, research and training for the treatment of children and young adults with heart defects. We provide a support service for the children and their families by refurbishing the family rooms and playrooms on the wards and contributing to the hospital’s parent accommodation. We fund key staff posts, and provide travel and other grants to families in their time of need. Our aim is to ensure these children have the best possible chance of survival. Our hope is to give ‘each child a childhood’.

Say hello... Phone

0113 392 5742

Email

info@chsf.org.uk

Web

www.chsf.org.uk

Twitter

@CHSurgeryFund

Facebook Search for the Children’s Heart Surgery Fund group


4 News

Children’s Heart Surgery Fund

Meet the CHSF staff... Sharon Coyle, Charity Director

“My day-to-day responsibilities include maintaining and encouraging new corporate partnerships and supporting some of our fabulous parents with their charity events. I have to ensure good governance and keep our Trustees up to date. I direct the SOS campaign, liaising with MPs, our PR company, the hospital, councillors and the media. My work is personally challenging yet rewarding!” Sharon.Coyle@chsf.org.uk

Myriam Barker, Community Fundraiser

“My role is to assist our supporters and volunteers in organising fundraising events and help raise awareness about the work the charity does in the community, and more specifically in the regions of North and West Yorkshire. My aim is to contribute to increasing funds to help the children and families who need the Yorkshire Congenital Heart Unit.” Myriam.Barker@chsf.org.uk

Debbie Field, Events Co-ordinator

“I’m responsible for all organised events, which I help to create, organise, promote and manage. I enjoy meeting all of our supporters and I am proud to be part of the CHSF family. I’m looking forward to meeting more of you at the events I have planned for 2014!”

Alex starts new fundraiser role... COMMUNITY fundraiser Alex Green recently joined CHSF from the Tigers Trust, Castleford Tigers charity. We asked her to tell us a bit about herself and her new role:

"I first heard about CHSF during the SOS campaign – I remember being so impressed by the public support for the heart unit. Fast forward 18 months, I saw CHSF were recruiting, so I jumped at the chance to apply. As one of the community fundraisers, I am responsible for contributing to generating income from supporters such as parents,

Debbie.Field@chsf.org.uk

Angela Casey, Finance and Admin Assistant

“My job is to do the finance and admin for the CHSF and to help out in other areas when needed. I get great satisfaction seeing what a difference donations can make to the children with heart defects. I also enjoy meeting parents and working as a team.”

INTERN Lauren Askey also joined CHSF recently, and told us about her role:

"I'm 19 years old and originally from Birmingham. I moved to Leeds two years ago, and am studying events management at Leeds Metropolitan University. I'll be working as events assistant

LEEDS 10k

Want to join our team? On your marks. Set. Go...

Alex.Green@chsf.org.uk

...and we also welcome Lauren

Registered charity 1148359

Angela.Casey@chsf.org.uk

Our new fundraiser, Alex

schools, sports clubs and community groups such as Rotary’s and Lions. I will also be looking at making grant applications to funding bodies for specific projects. I’m only a few weeks into the role but so far my work has been really varied. I have

spent some time on the ward and at out-patients, meeting patients and their parents. A lot of my time has spent liaising with individuals who are doing fundraising. My ambition is to make a significant contribution to increasing the income of CHSF which, in turn, will allow the charity to increase the fantastic work it is already doing. I’ll be looking at supporting the existing fundraisers and proactively looking for new ones, specifically in the regions of Wakefield and South and East Yorkshire."

SUPPORTING THE CHILDREN’S HEART SURGERY FUND JOIN THE TEAM: WWW.CHSF.ORG.UK OR 0113 3923987

with CHSF to gain more experience of the industry. After researching the charity, and meeting the team, I knew CHSF was a brilliant cause and an organisation I would love to be involved in, helping plan and run existing and new events."

Lauren.Askey@chsf.org.uk

How to raise funds for the CHSF, Gangnam-style A GROUP of youngsters in Sheffield danced their way to more than £300 for CHSF – inspired by one of our heart patients. Dancers from BM Myers School of Theatre Dance boogied their way through

a danceathon. Pupil Jody Brocklebank's brother Louis is a patient at the unit. School principle, Holly Wilde, said: "We did all sorts of party dances, there was a good atmosphere and all of them seemed to have a good time."


News 5

Visit us @ www.chsf.org.uk

Our Sheffield runners show their bottle...

(...it's just a shame the half marathon organisers didn't bring theirs) THE Sheffield half marathon hit the headlines when the water supplier failed to deliver, with "rebel runners" completing the course anyway – including some running for CHSF. Among them were Sarah Dixon and James Hitchman. Sarah was inspired by her sixyear-old sister Jo, who has TGA, and told us: "In the end it was a great day and we managed to raise £600." James who was inspired by Zack Ledson and raised more than £550, said: "Zack's mom and dad are close friends and I was inspired by his dedication to life and tremendous fighting spirit."

KATIE’S NEWS ROUND

Leeds first to use new heart rhythm monitor Pioneering smaller kit to be rolled out across UK to detect problems THE cardiac unit in Leeds has become the first in the country to use pioneering new miniature heart rhythm monitors. The tiny monitors - the size of two matchsticks - replace a much bigger piece of technology which is inserted under the skin of the chest. The smaller size means the procedure is now much more suitable for youngsters with suspected heart rhythm problems. Once in place, the monitors continuously send information about the patient's heart to cardiologists at the LGI – meaning episodes such as fainting can be analysed to see if they were caused by heart problems. Two young brothers were the first patients in the UK to receive the new monitors, in procedures carried out by consultant cardiologist Dr Mike Blackburn. Dr Blackburn said: "The breakthrough is how small and versatile it is, and that is a particular advantage for young patients. As well as being around 20 per cent the size of

Consultant cardiologist Dr Mike Blackburn shows off the new heart rhythm monitor, and compares it to the much larger previous monitor

conventional monitors, the device has the advantage that it can be placed just beneath the skin, meaning it is as quick and painless as possible to fit and, also, is not noticeable once in place. It will automatically transmit any unusual

heart activity wirelessly to a secure system that can be accessed instantly. "This means we can continuously monitor the patient's heart before, during and after fainting to identify whether the problem is heart-related."

TD staff share the love

THE playroom on Ward L12 got a Valentine's Day makeover thanks to TD Direct Investing. Staff from our long-time corporate supporter turned the playroom into a sea of heart-shaped balloons

and decorations, and provided themed craft activities for patients, including Grace Sykes, pictured. TD staff have decorated the playroom for Valentine's, Halloween and Christmas for many years.

● THE Somerville Foundation – the national organisation which represents grown-ups with congenital heart conditions, will be holding their annual conference in Leeds on October 18. Speakers from the LGI's adult congenital heart disease unit will be presenting. Contact conference@thesf. org.uk for details. ● OH, what a night it's going to be when supporter Claire Noonan holds a 70s disco on May 24 at Leeds Irish Centre to raise funds. If you fancy showing off your disco moves and fancy dress, you can buy tickets for this boogie wonderland for £10 from Claire (clairer25@ icloud.com or 07845 454585). ● SUPPORTERS Joe Barry and Lauren Middleton are holding a family summer music night on July 25 at The Spinning Wheel in Leeds. Admission is £2.50 for adults and £1 for under-16s and, as well as great live acts, there are fab raffle prizes up for grabs, including tickets to Diggerland, Jorvik Viking Centre, Mother Shipton's Cave and the West Yorkshire Playhouse.


6 News

Children’s Heart Surgery Fund

Review Kate's a on track cut above with hairy challenge THE new national review of congenital heart services is continuing – and CHSF remains hopeful about the potential outcome. After leading the fight against the original flawed process, CHSF is keeping a close eye on the new NHS England review. CHSF's Sharon Coyle said: "There'll be a consultation on the new proposed national standards for services in the summer. We feel basing the review on standards rather than reducing the number of surgical centres is the right approach."

GIFTS IN MEMORY

● VICTORIA Jackson has donated £1,217 in memory of her husband Simon. This includes £275 from the Yorkshire Coast College and £442 from Driffield Church of England Infant School. Simon was born in 1966 and was treated at Killingbeck Hospital. He was one of the first patients to have the Mustard procedure, at Great Ormond Street. ● MAUREEN Corrigan donated more than £570 in memory of Dennis Corrigan. ● MRS Johns has donated more than £550 in memory of her husband Henry. The couple's grandson, Toby, has had heart surgery. ● DIANE Clarkson donated £700 in memory of Barry "Baz" Clarkson, whose nephew Billy Brand has had heart surgery. ● MRS B Stoute has donated £995 from the collection taken at the funeral of her late husband, Armoul, who passed away in January. Thank you to all of the above for their generosity at such a difficult time.

BRAVE fundraiser Kate Hobson raised over £1,270 by shaving her head – in memory of one of the heart unit's patients. Kate, who works at Sainsbury's in Otley, was inspired to get out the scissors by colleague Hannah Reynard, whose daughter Ella NewsonSmith passed away last year aged five months. Ella was cared for by the heart unit at the LGI. Kate's total included £200 from Sainsbury's.

Search is on for CHSF regional ambassadors THE Leeds cardiac unit, and CHSF, covers a large part of the country – and we'd like your help to make sure we are doing that as well as possible. We're putting together a team of volunteer ambassadors across the Yorkshire, Humber and North Lincolnshire region, with the aim of increasing awareness of our work – especially in the areas around the cardiac unit's 17 outreach clinics. We

want to recruit ambassadors who are willing to represent CHSF in their local communities – bringing together volunteers and putting on fundraising events. The role would suit people who have good organisational and communication skills but, most importantly, have a strong interest in CHSF, local knowledge and community contacts. Regional volunteer

ambassadors will lead the way for CHSF, helping us trial new ideas and contribute to existing initiatives. If you're interested in taking up the challenge and finding out more information, please contact our new community fundraisers, Myriam (myriam.barker@chsf.org.uk) or Alex (alex.green@chsf.org.uk), who will be supporting the ambassadors every step of the way.


News 7

Visit us @ www.chsf.org.uk

Sky no limit for Barnsley firm's staff...

KATIE’S NEWS ROUND

STAFF from Barnsley firm Premdor Crosby Ltd have raised more than £2,500 by a sponsored skydive. Twelve staff jumped for the firm, which is raising funds for CHSF and the Royal British Legion throughout the year. One was Anne Ellis, whose grandson Declan Hodgson was a heart patient who passed away aged 12. Anne, pictured, dedicated her jump to Declan and described the experience as "exhilarating". She said: "We miss Declan terribly and it means so much that I am putting something back to say 'thank you' for the opportunity of 12 wonderful years we had with him."

CHSF contributes £30k as ward switches to be nearer PICU and theatres

Heart ward in move to children's hospital wing THE heart ward is on the move – with L12 staff and patients set for a short trip to D floor in the Leeds Children's Hospital in Clarendon Wing at the LGI. With the move into the new home from May 13th, comes a new number – the ward will now be Ward 51. Matron Heather Wardle said the switch will have clinical benefits. She said: "The new ward is right next door

to the new paediatric intensive care unit and the new operating theatres – literally around the corner." Staff nurse Rachel Cadwallader said: "Because Ward 51 will be closer to PICU and the theatres, it will feel much more part of the whole cardiac team. "The new ward will be a nicer environment for patients and parents – it will be brighter and will have much

better views. For example, the new high dependency unit will have the same number of beds, six, but will be almost double the size of the current HDU." It will be the first time the ward has moved since transferring from the old Killingbeck Hospital in 1997. CHSF is contributing £30,000 to the decoration of Ward 51, including artwork throughout the ward.

● THANK you to all who let us know their updated contact details. If you'd like to make sure you're getting all the latest charity updates, email your details to info@chsf.org.uk. At some point in the future we're hoping to send BraveHearts by email to those who'd like it in that format, so make sure we've got your address! ● WE'VE teamed up with Clothes for Charity – so supporters can raise money by donating unwanted clothes. Charities are paid £200 per tonne of clothing. Visit www. clothesforcharity.org.uk to get a secure bag. ● BEEN on holiday at Easter and got left over foreign coins and notes lying around? Why not donate them to us – we can accept any currency, even preEuro and old British and Irish cash. Next time you're at the LGI, drop into the CHSF office to make your donation.

Benjamin inspires team to get their skates on AN intrepid team of fundraisers were rolling in it – after raising £4,500 by skating and cycling all the way from Leeds to York! Little 15-month-old Benjamin Doyle, who has a complete AVSD, a muscular VSD and coarctation of the aorta, and had surgery a few months ago, was the inspiration for the event. His mum, Jessica, said: "It was my twin brother who came up with the idea – I think he wanted to relive some childhood memories

Team members refuel after their marathon effort

of endless hours playing on our skates!" The money will go towards the decorating and furnishing of the new heart ward, and Jessica added:

"It's more than I ever thought we would raise, and we can't wait to get cracking with our next fundraiser – we have lots of things lined up."


Could you help CHSF with a regular standing order donation? To set up a regular standing order donation with Children's Heart Surgery Fund, please complete this form and return to: Children's Heart Surgery Fund, Room 003, B Floor, Brotherton Wing, Leeds General Infirmary, Leeds, LS1 3EX. Please do not send this form to your bank. Title: First name(s): Surname: Address: Postcode: I would like to make a regular gift via standing order of: (tick as appropriate)

£ £3 £5 £10 Other every month £ OR £50 £100 Other annually Please debit the above amount from my account starting on or around this date and until further notice

D D M M Y Y

Instruction to your bank or building society to pay standing orders To: The Manager Address:

(name of bank/building society)

-

Branch sort code:

-

Bank or building society account number:

Postcode: Name(s) of account holder(s): Signature(s):

Date:

/

/

And thereafter the same sum instalments to Yorkshire Bank, 19 St Sepulchre Gate, Doncaster, DN1 1SJ; bank account 24204715; sort code 05-04-14; in the name of Children’s Heart Surgery Fund. Make your donation 25% more at no extra cost to you

Ticking this Gift Aid Box means that for every pound you give, we get 25p from Her Majesty's Revenue and Customs, helping your gift go further. Ticking the box indicates your agreement to the following statement: I declare that all donations I've made to Children's Heart Surgery Fund during this tax year and during the previous six years and all donations I make in the future until I notify you otherwise, are Gift Aid donations. I am aware that, to qualify for Gift Aid, what I have paid or pay in UK income tax or capital gains tax for the relevant tax year must at least equal the amount that the charity will claim under Gift Aid in respect of my donations in that tax year.

I'd like to

We take data protection very seriously. We promise not to pass your details on to other organisations. If you would prefer we do not contact you by post, please tick here If you are happy for us to contact you by email, please enter it here: Registered charity 1148359 ● Registered company 8152970


News 9

Visit us @ www.chsf.org.uk

Cheers! Pubgoers' firewalk success

NONE of the brave souls (or soles) at The Fleece Inn in Bishop Wilton got cold feet on their fundraising challenge – they walked over hot coals for CHSF. Not content with making the trip once, all 23 walkers braved the coals five times each and raised more than £2,000! Lisa Rushworth, who runs the pub with her husband Ian, paid tribute to the team, saying: "Some were more nervous than

Thanks to the efforts of our fundraisers and donors, since the last issue we've approved lots of spending, including: ● We've decorated and equipped the new family accommodation rooms in Brotherton Wing ● We've bought pyjamas, underwear and babygrows for use by patients who are admitted unexpectedly ● We've purchased a high definition ultrasound scanner for use on the paediatric intensive care ward ● We've paid for nursing staff to attend a study day in London, and also to attend the Cardiology in the Young annual conference ● We've bought post-surgery stickers for children on PICU ● We've bought photo albums to move the photos of the children off the walls on Ward L12 when the ward moves ● The end of bed trolleys we told you about in the last issue are now in use on ward L12 (pictured)

others but, when it came to the nitty gritty, everyone rose to the challenge. Supporters were in good supply and we had all participated in a little Dutch courage!" Lisa and Ian's son, Jack (pictured with the team), had surgery last year and Lisa, who has hosted various fundraising events, said: "CHSF has been part of our lives for a long tme. It's nice to be able to give a bit back."

Fundraiser invites public to join her year of epic challenges

Want adventure? Join Linda's team FUNDRAISER Linda Wales is taking on an incredible series of challenges to raise money for CHSF and to honour the memory of her father. Linda, from Leeds, lost her father Melvin to heart disease when he was just 42. Now she is marking her own 42nd year by targeting 12 daunting events – one per month – and inviting CHSF supporters to join her. Starting in May, Linda will take on the Ullswater Challenge – canoeing the length of Ullswater, climbing England’s third highest mountain, Helvellyn, and then jumping on a mountain bike for a 22

Linda Wales aims to raise £42k

mile cycle. From there, Linda’s monthly adventures will see her taking on the national three peaks challenge; climb various mountains including the mighty

22,999ft Khan Tengri; as well as competing in the popular Tough Mudder event, a fire walk and a zip wire challenge. She’ll finish her year of events in April 2015 by walking 100km in just 24 hours. Linda is hoping to raise £42,000, to be shared between CHSF, the British Heart Foundation and Heart Research UK. She said: “The 12 challenges range in terms of difficulty and type of challenge so there’s something for everyone.” You can sign up for a challenge or follow Linda’s progress via her blog at www. living-above-the-clouds.com.

● We've paid for two wheelchairs so children on L12 can spend time off the ward, for example in the roof garden ● We've bought equipment bags for use during ambulance transfers, trips to cath labs and CT/MRI scans ● We've paid for travel/lunch for young people to attend a transition workshop ● £4,785 raised by David and Louise Tinsley, who organised Cody's March – a 33 mile walk from Doncaster to the LGI in memory of their son, who passed away in October – plus the £5,000 raised by our Valentine's Ball, has helped us buy a second 3D distraction machine for the unit. The machine relaxes children by letting them watch 3D cartoons while procedures such as blood tests and scans are carried out. ...and lots more, so a huge thank you to everyone who has contributed!

Th a n k yo u !


10 Features

Children’s Heart Surgery Fund

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Wear Red Da Yorkshire re

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The second annual Wear Red Day was a phenomenal success awareness of congenital heart defects and more than ÂŁ30,0 decorating the new children's heart ward. Katie Bear visited fame), Whitehill Community Academy in Halifax, Methley Prima while hundreds of you held your own events. Huge thanks to

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CHSF PLACES SOLD OUT


Features 11

Visit us @ www.chsf.org.uk 5

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Day: Painting ed for CHSF

cess, with hundreds of schools and businesses raising 30,000 for CHSF - which will be spent equipping and ted Thornhill Academy in Dewsbury (of Educating Yorkshire rimary School in Leeds, the Leeds Hilton and the heart unit, s to everyone who took part – here are just a few!

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Pic: http://digitalstunts.com

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1 Isaac, Jacob, Joseph & Elijah Sheard. 2 Rosalie and Maisie Bartley. 3 Musical Minis join the fun. 4 Staff at Little People nursery in Stanningley, who also completed a midnight fundraising walk at Kirkstall Abbey. 5 Libby-Mae Rose. 6 Georgia Ling with staff from Educating Yorkshire's Thornhill Academy. 7 George Muirhead, with an original Katie Bear! 8 Thornhill Academy pupils tuck into cake sale goodies. 9 Leeds Hilton staff ready for their street collection. 10 Harrison Crumpton who baked cakes and buns to raise money. 11 Libby-Mae Rose with Lauren Agnes & staff from Acorn Web Offset Ltd, Normanton. 12 Year Six at Methley Primary. 13 Thornhill Academy pupils. 14 Methley Primary pupil & heart patient Zoe Arnold. 15 House of Fashion's Wear Red Day charity event at Baracoa Luxe Bar in Leeds. 16 Patient Holly Heppenstall with her big sister Harriet & Gillian Dyson, the headteacher of Holmfirth JI&N School. 17 Katie gets mobbed at Whitehall Community Academy in Halifax. 18 Katie drops in to say hi to staff on L12. 19 Katie relaxes on the Wii in the ward playroom with patient Madehah Akhtar. 20 Rose Lumsden & Katie in the ward playroom. 21 Heart patient Sophie Hogg with her brother. 22 Charlie Ratnik gets a Katie cuddle at Whitehall Academy in Halifax. 23 Holly Wass. 24 Amelia Warr with staff at Ulceby Pre-School. 25 L12 patient Logan Jameson-Briggs. 26 Staff at Azzurri Communications, Wakefield.


12 Family stories

Children’s Heart Surgery Fund

Evan was born fighting ...and hasn't stopped

Mum Rachel tells us the story of her warrior Evan, who faced two operations in his first few months "I REMEMBER us driving home from our 20 week pregnancy scan feeling numb – the sonographer had just told us she suspected our baby had coarctation of the aorta. I didn’t know what to think – I was hoping it was all a mistake and everything would be okay, but I started to fear for the life of my unborn child. Two days later we were at the LGI for a specialist scan. I stared at the screen, not understanding anything I was seeing. The diagnosis was aortic stenosis, and I had more scans later in my pregnancy as they checked on the progress of the stenosis and looked to see if there was coarctation – we wouldn’t know for sure until the baby arrived. The cardiologists were happy for me to have a normal delivery at the LGI, but then Evan would be taken to special care. I came into the LGI at 39 weeks for a stretch and sweep and 12 hours later I went into labour.

DEVASTATED

Evan came into the world kicking and screaming. After initial checks the doctors were pleased with him and I had my first cuddle. Then I asked them to take him straight away so they could start what they needed to do. Less than an hour later I joined him on special care, where he was all wired up. The first 24 hours are still a blur. Evan’s stenosis was confirmed as mild to moderate but they wouldn’t be sure about the coarctation until his duct closed. It was the next day our world turned

Evan is now 18 months old and full of energy

Katie’s casefile

Name: Evan Davies Age: 18 months From: Leeds Mum & dad: Rachel & Miles Brother: Sam, aged 3 CHD CV: Aortic stenosis, subaortic stenosis and coarctation of the aorta upside down – Evan’s second scan confirmed the coarctation and we were told he would need surgery. Even though we had been prepared, I was devastated. I just want to get it over and done with so we could go home. It seemed so unreal. We arrived in the high dependency unit in ward L12 just 48 hours after Evan’s birth. My parents were looking after my other son Sam at home and, although I missed him dreadfully, I had vowed before Evan’s birth that I would never leave his side. The nurses were amazing. They made sure I was okay and during the night they would come to get me when he needed feeding or a change as I wanted to do that myself. They always respected my wishes – although they nagged me to get more sleep! The drugs Evan was on started to destroy his veins and at one point he had to have cannulas in his head, which was horrible to see but the

amazing doctor was able to get the cannulas in without fuss. We met Evan’s surgeon, who went through the procedure, a coarctation repair via the left thoracotomy – so avoiding open heart surgery. The morning of the operation we weren’t sure whether it would take place as there had been emergencies. Then it all felt very quick when we got told it was happening – one minute we were waiting; the next we were kissing our six day old boy goodbye. During Evan’s surgery my husband, Miles, made me leave the hospital despite my hesitation. I remember sitting in a café, just feeling lost and empty and missing my baby desperately. Then we got the call to go to the intensive care ward. The surgery had gone well – they had cut out the narrowing in his aorta. The surgeon said he hoped Evan’s small arch would grow in the future but he warned us that, if it didn’t, further intervention would be needed.

WARNING

We were taken through to see Evan. Those first few minutes and what we saw will never leave us. There was our tiny baby all wired up, monitors bleeping. Evan was ventilated and barely recognisable. The nurses kept us sane through the next 48 hours – I knew Evan was in good hands. Evan went from strength to strength and within 48 hours he was back in HDU and we were home just five days after surgery. We couldn’t believe what he had gone through and how well he had done. Looking back, the honesty and kindness the staff showed us meant we were as To submit prepared as possible for what happened. stories and For the next three months, Evan photos, or to was seen every four weeks in clinic subscribe, email until, unfortunately, things started to bravehearts@ deteriorate and it became clear his aorta chsf.org.uk wasn’t growing as we had hoped. So we found ourselves back on ward L12, in theory for a balloon dilation. But things didn’t go to plan. When they took Evan down to the catheter lab, they discovered the narrowing wasn’t where he had had his previous surgery – it was actually further up on the transverse arch. The only option was more surgery but, unlike before, it would be open heart surgery. We were devastated. We knew Evan would have to endure a longer operation where he would need bypass. We were told the risks and we quizzed the surgeon. I couldn’t get my head around what was happening – we just I've learned that it's okay hoped and prayed that we would be able to walk out of the hospital with Evan as we had before. to cry and show you are The night before his surgery I was alone with Evan and I didn’t sleep a wink. He was still being scared, and to ask for help – breast fed and, once 5am came, it was so hard to try to explain to my five month old that he couldn’t it doesn't mean you are weak have any more milk. We walked the long walk down to theatre and


Visit us @ www.chsf.org.uk

Family stories 13

“” While Evan was having surgery I remember sitting in a café feeling lost and empty, missing my baby desperately

Evan had two operations to repair his heart, including one open heart surgery

When we found out about Evan’s heart condition we chose the name Evan as in Welsh it means young warrior – and he has lived up to his name. Just days after his open heart surgery he was trying to crawl and has shown just as much determination since. Someone once said that those that are born fighting never stop, and that’s what Evan is like – STRENGTH he really is a warrior. He never sits still, he climbs Then we got the call – he was okay and back in everything and throws himself down slides at the ICU. We were told he had gone on and off bypass park like he has no fear. He started his first football very smoothly and the surgeon was able to do what class last week and enjoyed every minute. He has so he needed to do without a glitch. much energy and the most infectious laugh. This time in ICU we knew what to expect when For a long time after Evan’s condition was we saw him and felt less detected Miles and I didn’t dazed. The nurses were cope. While I was pregnant amazing again, and we we found it very hard and, in met two other very special a way, mourned our healthy families whose boys had child. Over time, I’ve learned also had surgery. We really it’s okay to cry, to show you started to feel part of a larger are scared, and to ask for family. Evan again went from help – it doesn’t mean you're strength to strength – he even weak. Now we just get on Evan's condition was detected prenatally with life because there is managed to grow his first two teeth whilst in ICU – we joked he was taking no other way to be. We refuse to let this condition advantage of the morphine! Just five days later we define him or us and see it as a part of our life not were home again and after just a few weeks Evan the thing that dictates our life. was back to the baby we knew. I enjoy each day with Evan yet try not to treat It has been over a year since his surgery and his him any different to my other son. I know wrapping aorta has grown, his heart function is good and his him in cotton wool isn’t the answer – he deserves stenosis is still moderate. They are closely watching to be allowed to live as normal a life as possible. I his valve which is slowly getting worse and will need try not to think too much about the future and just replacing in the future. enjoy the here and now with our little warrior." kissed Evan again, and had to walk away and leave him for a second time. This time I felt so different – I couldn’t leave the hospital. We sat in Costa and drank gallons of tea whilst reading and reading the newspaper still not really taking in what the news articles said.

What is coarctation of the aorta?

IN coarctation of the aorta there is a narrowing in part of the main artery that leaves the left side of the heart. The degree of narrowing can vary from person to person. In severe cases, symptoms usually appear within the first few weeks. Coarctation of the aorta is sometimes detected later on in childhood, and occasionally during adulthood. Surgery may be carried out to repair the narrowed part of the aorta. Sometimes a balloon can be inserted into the aorta to open up the narrowing.


14 Family stories

Children’s Heart Surgery Fund

I'd heard about the world's tallest bungee jump. I'd never done one before and I'm all for experiencing new things and making my mum go grey, so I thought I'd give it a go!

Katie’s casefile

Name: Ashleigh Willetts Age: 22 From: Barnsley, now working in Singapore teaching dance CHD CV: Supraventricular tachycardia (SVT)

From fainting as a teen to taking on the world's tallest bungee jump – Ashleigh tells her story... "I FIRST discovered I had supraventricular tachycardia at the age of 11, whilst I was at dancing. Then I had three ablations – a procedure to control the rhythm of my heart – in three consecutive years when I was 14, 15 and 16 years old. During the second ablation I was awake. I've now been clear of the condition for six years and was discharged from the heart unit four years ago. Hopefully, I will be clear of SVT for the rest of my life – even though pulling silly stunts like bungee jumping doesn't put me in excellent stead! My earliest (and favourite!) memories from my condition were watching all my friends freak out at school and at dancing when the ambulance would arrive and cart me off! But they got used to it very quickly as it began to happen more and more often, once in my GCSE expressive arts exam! Mum and dad weren't best pleased either, but everyone knew exactly what to do and were a great support. I'm now 22 years old. Originally I'm from Barnsley, but I moved to Singapore last August after I graduated from Blackpool and the Fylde college with a 2:1 BA Hons degree in musical theatre. I would love younger patients with heart conditions to look at us grown up patients as role models. It wasn't easy shifting my condition but, when I did, I haven't had any problems since and moving to Singapore, dancing everyday, bungee jumping, riding stupid rollercoasters and so on wouldn't have been possible if I still suffered from SVT. I would love other people with heart problems to read this and see that with perseverance and high spirits, almost anything is possible. That goes especially for the teenagers who are treated on the unit. They're at the age of starting to decide their career path, going out with friends, becoming independent and so on, and I really want them to follow their hopes and dreams despite their conditions.

BUNGEE

The Macau Tower in Macau, China, measures 1,109 feet (338 metres) and was built in 2001. In 2006, Guinness World Records recognised it as the highest commercial bungee jump in the world. The jump itself is 760ft (233m) – four and a half times the height of Nelson's Column in Trafalgar Square

I moved to the Far East to pursue my career as a dance teacher. I was planning a visit to Hong Kong with my dad and had previously heard about the world's tallest bungee jump just a short ferry ride away in Macau. I'd never done one before and am all for experiencing new things and making my mum go grey, so I thought I'd give it a go! It seemed like the perfect opportunity to


Family stories 15

Visit us @ www.chsf.org.uk

Ashleigh, who raised more than £1,600 for CHSF by braving the jump, is living in the Far East working as a dance teacher

“ 'Friends would ” freak out when I would love other people with heart problems to read this and see that, with perseverance and high spirits, almost anything is possible

What is SVT?

the ambulance carted me off' raise money for my favourite charity because, without the heart unit at the LGI, I certainly wouldn't be able to do it! I was a bag of nerves for 16 weeks – stressing out and sharing my sponsor page everywhere I could. But, when the day arrive I was as cool as a cucumber – much to my surprise! I felt so amazing having raised £1,616.48 for CHSF, which was written on the back of my homemade t-shirt by my wonderfully talented friend Jeni Anthony. The Macau Tower was a great place to hang around – I could see for miles and it's in a

lovely part of the world. I was the first one to jump of the whole day, so I had an audience watching!

AMAZING

I was fine until I stood on the edge, then a few choice words and phrases came out. I had a serious word with myself and, before I knew it, the instructors had counted down from five and I was on my way down! It felt amazing! And surprisingly cushiony and bouncy and wonderful! All I wanted to do was run back up and do it again and again – I'd do it every day if I could!"

SUPRAVENTRICULAR tachycardia is a type of arrhythmia (abnormal heart rhythm) where your heart beats too fast. It's caused by faulty electrical signals in your heart and often affects young, otherwise healthy people. The symptoms experienced by people during an attack of SVT may include palpitations, shortness of breath, chest pain, dizziness and fainting. Fainting can be caused because the heart may not be able to pump blood effectively around your body because of the abnormal heart rate. This can result in low blood pressure, which can lead to fainting. One particular type of SVT is called WolffParkinson-White syndrome – singer Jessie J has this syndrome and has spoken about her heart problems during interviews.

What is an ablation?

ASHLEIGH had three ablations to correct her SVT. During the ablation procedure, small tubes called electrode catheters are passed into the veins and threaded to the heart. Any tissue causing abnormal electrical signals in the heart is then destroyed.


16 Staff interview

Children’s Heart Surgery Fund

HEATHER Wardle has been looking after babies and children with congenital heart defects since the days of Killingbeck Hospital. With more than 30 years' experience of nursing under her belt, Heather is now matron for cardiac services and paediatric intensive care. We caught up with her to find out a bit more about her vital role...

“ ” We let the surgeons and the cardiologists think they run the unit, but they know it's the nurses who are really in charge...

'An extremely rewarding and humbling job...' How long have you worked in nursing?

I started my nurse training at St James’s Hospital when I was 18 and I enjoyed every single minute of it. Things were different then, and we all trained as adult nurses first. During my training I did a paediatric placement and I knew within a week of starting it that my future would lie in nursing children. After I qualified, I worked for a couple of years as an adult nurse, and then I got my first job working with children on the bone marrow transplant unit and the children’s cancer ward, which I loved. Sometimes our patients would need to go to intensive care, and we would go with them to look after them there. During this time, I decided I would like to develop further skills in intensive care nursing so when an opportunity arose to work on the cardiac intensive care unit at Killingbeck Hospital I applied and was successful in being appointed. This was my introduction to nursing children with congenital heart disease and I have never looked back. I worked on cardiac PICU for many years, first as a staff nurse, sister and then senior sister. In 2008, I applied for and secured the post of ward manager on ward 10, now ward 12 (and soon to be ward 51!). I loved working on ward 12, but when the opportunity arose to apply for matron for PICU and cardiac services, I was ready to take up what would be my next challenge. What does being matron involve?

Heather worked on cardiac PICU for many years, joining as a staff nurse in Killingbeck before becoming sister and then senior sister. In her current role as matron, she still spends a lot of time on the heart wards with patients

The matron role is diverse, with many responsibilities but, in a nutshell, I have overall responsibility for the leadership and management of nursing and associated staff, management of resources, budget and risks for PICU and the cardiac service. I provide assurance to patients' families and the hospital Trust that we are delivering safe and

effective care. It's difficult to describe a normal day, but I am usually at my desk by 7.15am and I get an update of any issues which have arisen overnight. I manage over 200 members of staff so there is always some admin work to do and emails to answer, so I get on with some of this to give the wards opportunity to hand over to the day shift. I will then go round and visit the wards, providing any help or support which may be needed by staff or families; troubleshooting any service delivery problems. I also get updated on how all the children are doing at this time. During a typical day I will also need to attend meetings with the management team of the children's service, the ward managers or lead clinicians. Then I'll usually tackle some more admin before I go out to the wards again. Some days I might be teaching on a course – I also need to maintain my own professional development so I might be attending a course myself. Sometimes I go out of the hospital as the cardiac service covers Yorkshire, the Humber and North Lincs, so meetings are held around the region. No two days are the same! What do you enjoy most about nursing?

I love the diversity and the challenges of my role, even though it can be tough at times. The best bits are when we see children going home to their families and knowing we have been a part of that. There are some children who have had long periods of time in hospital and overcome so many problems – they are truly inspirational. Over the years, I have looked after families during their darkest hours. I don't find it any less emotional or difficult than I did when I started nursing, but I have learned to cope with the emotionally tough times because children and their families are relying on you. You have to be their strength during these times and do whatever they need you to do to


Staff interview 17

Visit us @ www.chsf.org.uk

“ ” Seeing children who have had long periods of time in hospital and overcome so many problems going home to their families is truly inspirational

Heather, pictured with three-month-old patient Ziad Rashad, is keen to see the unit focus on a bright future after years of uncertainty during the national Safe & Sustainable review. Below, Heather and CHSF's Sharon Cheng led the campaign team up Downing Street to hand in the Save Our Surgery petition to No.10.

support them. But junior staff too, they need you to support them as well. I have been nursing children with CHD since 1985, so I have looked after many children from babies into children into adults. It's a very rewarding aspect of the job. It's also very humbling in some cases, as I have seen the enormous challenges some children and their families have faced and how they have overcome them. What achievements are you most proud of in your career?

That's a difficult question. I think I can sum it up by saying that I am proud to be a nurse, and if I have made a difference to the lives of the children and families I have had the great privilege of looking after for the past three decades, then I am proud of that.

What do you think the future holds for the cardiac and PICU nursing teams?

It's been a tough couple of years for the unit but our firm commitment to the children and families in our service, along with the faith and belief they have shown they have in us, have kept us going. There is enormous strength and depth in the nursing team. I am proud to be part of it. They are a fantastic team with many years of experience. This means that they are able to pass on their knowledge, skills and experience to the junior nurses. This will ensure that children needing our service in the future will benefit from that knowledge as well. They have unwavering commitment to the children and the service, and constantly strive to deliver the highest standards of care. We moved in to a brand new PICU earlier this year and we will be moving into the new cardiac ward and HDU early in May. The future looks very exciting, and we are looking forward to further developing the service.

How important is CHSF to the unit?

Extremely – from the day-to-day support CHSF provides to our children and families; to the sophisticated equipment; and everything in between. As nurses, we are also grateful to CHSF for funding educational conferences which enable us continually develop our practice and improve care for children with CHD. What would you say to anyone thinking about a career in nursing?

If any youngsters asked me about going into a career in nursing I would say 'go for it'. Even now, after over 30 years in nursing, there has never been a moment when I have thought of doing anything else. I feel really lucky that even after all these years I feel the same passion for my job. We let the surgeons and the cardiologists think they run the unit. But they know it's the nurses who are really in charge...


CHSF merchandise order form

CHSF1

CHSF5

CHSF6

CHSF7

CHSF2

CHSF3

CHSF4

Code Description Price CHSF1 CHSF mug £3.00 CHSF2 Heart-shaped balloon £0.50 CHSF3 T-shirt Adult S M L XL £8.00 Youth XS S M L £6.00 CHSF4 Katie Bear pin badge £1.00 CHSF5 Flashing heart pen £2.00 CHSF6 Window sticker £1.00 CHSF7 Trolley token keyring £1.50 CHSF8 Adhesive notes £0.75 CHSF9 Heart pin badge £1.00 CHSF10 Colouring book and crayons £2.00 CHSF11 Car sun visor £5.00 CHSF12 Car air freshener £1.50 CHSF13 Katie Bear keyring £1.50

Quantity Total

I enclose a cheque made payable to Children's Heart Surgery Fund for £

Name: Address: CHSF8

Postcode: Phone no.

CHSF9

CHSF10

Email:

Please return to: Children's Heart Surgery Fund, Room 003, B Floor, Brotherton Wing, Leeds General Infirmary, Leeds, LS1 3EX Please allow 28 days for delivery. For queries phone 0113 392 3987. Postage & packaging included.

CHSF11

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Registered charity 1148359 ● Registered company 8152970

CHSF13


Visit us @ www.chsf.org.uk IARY EV ENTS D

Katie’s Club

Leeds Half Marathon

19

CHSF PLACES SOLD OUT

Could you go 13.1 miles for CHSF? May 11th.

Leeds Junior & Mini Run

Join our huge team of kids on the 1.5k or 2.5k runs in Leeds city centre as part of the half marathon day. May 11th.

Lo ga n James on-Brigg s, 4 m th s, w h o h ad a V SD re pa ir in Fe b

Yorkshire Golf & Business Festival H ea rt patien t K at ie S utcl if fe , 5, w it h h er t w in si ster Reb ec ca

o h ad woo d, 5, w h Jayden H op rger y su SD A & lve tr ic us pid v a ca ster, 2, from Do n To by Jo h n s, is os rt ic sten w h o h a s ao

We'll have two teams in this threeday festival at Moor Allerton Golf Club. Play with a friend, a pro and a celebrity; take your seat at a black tie dinner; and then enjoy a family fun day on the Sunday. May 25-27th.

Yorkshire 3 Peaks

Take on this famous challenge in the Yorkshire Dales as part of our 100-strong professionally-guided team. July 18th.

Run for All Leeds 10k

Get your running shoes out for the Jane Tomlinson run through Leeds. July 20th.

Run for All York 10k

Or take on the York event instead (or as well as!). August 3rd.

G race R VSD pu lm obin s, five days af te r h ad h o h w , er ey on a ry a rter kn y a n d VSD op Lay to n H oc wks 0 1 ed ag y & PFO su rger

Want to be in Katie's Club? Email your photos to bravehearts@chsf.org.uk

7m t h o ld Ty af te r his le r F li n t f rom Le le f t c o a rc t at io n e ds, re p a ir

CHSF has moved office – here's how to find us! x marks the spot! We're in Brotherton Wing, opposite Millennium Square

How to find us...

Enter Brotherton Wing through the entrance on Calverley Street. The lift/ stairs are to the left of the reception desk. Go up one level, to B Floor. Go through the doors that are on your right when you exit the lift, and the CHSF office is a few doors down the corridor, on the left.

Fire Walk

Back by popular demand! Our hottest event of 2013 returns – can you handle the heat at Stockeld Park? November 7th.

Yorkshire Marathon

The county's most popular marathon through the historic streets of York. October 12th. Clarendon Wing

Leeds Station Collection

Jubilee Wing Brotherton Wing

x

Our new address is: Room 003, B Floor, Brotherton Wing, LGI, Leeds, LS1 3EX

We're looking for eight volunteers to help with our annual Christmas collection at Leeds train station. December 5th.

Wear Red Day 2015

Back for the third year – after raising over £30k in 2014, Wear Red Day aims to be even bigger and better next year! Can your school or firm help paint the county red? February 6th, 2015. Contact Debbie on 0113 392 3987 or debbie.field@chsf.org.uk for info


R O F E G N E L L A H C A R O F P U U O ARE Y ? D N U F Y R E G R U S T R A E H ’S N E R D CHIL

YORKSHIRE 3 PEAKS FRIDAY JULY 18, 2014

HERE’S WHAT YOU NEED TO KNOW... ► 24.5 miles of walking ► 5,250ft of climbing ► Professional guides ► Free training walks ► Only £25 to enter ► £150 fundraising target

REGISTER TODAY!

ors.co.uk Sign up at www.kutaoutdo 987 3 2 9 3 3 11 0 e n o ph fo in r Fo .org.uk or email debbie.field@chsf

Pen-y-ghent

Whernside

Ingleborough


BraveHearts - Issue 7