Heartline Families Newsletter Summer 2015

Summer newsletter

2015

New Faces Join the Heartline Team!

The Team Above left: Andy Wardle Clinical Relations Adviser Above right: Hazel Greig-Midlane - Executive L-R Clockwise: Mehul Nathwani (Fundraising), Denise Hadow (Treasurer), Linda McQuaid (Chair), Natalie Persoglio (Trustee), Val Thubborn (Trustee)

Heartline Families welcomed some brand new faces to the dedicated team, at a trustees’ meeting in London last month.

Our new Chair of Board of Trustees is Linda McQuaid who is a GOSH trained children’s nurse who now works as interim NHS manager, currently at Surrey & Borders NHS Foundation Trust where she is responsible for children and young people’s services. It was Val Thubbron’s first meeting as Trustee with Family Services lead. Two new trustees were elected: Mehul Nathwani, Fundraising lead, and Andy Wardle, Clinical Relations lead. Denise Hadow is our treasurer and Natalie Persoglio our marketing and pr adviser.

Linda McQuaid said: “It’s an exciting time for all of us. We’re currently working on our aims and goals for Heartline over the next few years. We are focusing on how we can give our families the very best possible support in all areas. Hazel has achieved some incredible things for Heartline and I look forward to continuing to help us succeed in our aim to support all heart families, wherever they may be. I’d very much like to extend our thanks, on behalf of the team and our families, to Hazel for her dedication and passion for Heartline over the years - without her we wouldn’t have been able to help our families through some of their most difficult times.”

Hazel G-M stood down from the Board of Trustees but will continue to work as Heartline Executive and adviser.

See page 9 for more information

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Summer Fun for Wetsuit Babies!

Children with heart conditions often can’t maintain their body temperature when swimming or playing in water, even in heated pools, but we don’t think this means they should have to miss out! Some of our mums tell us how our wetsuits have helped her children to enjoy summer again.

Water baby Martha Grace

”You may have noticed Martha Grace wearing a red wetsuit in our Center Parcs photos. No it isn’t to hide her scar, and no it’s not a flotation device - its job is to keep Martha warm when she’s in the water.

At the beginning of the year I applied for Martha Grace to have a wetsuit so that we could take her swimming when we went away, and hopefully she could play in the paddling pool in the garden in the summer.

The wetsuits are provided free of charge to heart children and as they grow they can request a new one”.

Water baby Oscar “I just wanted to send you a couple of pictures of our little boy Oscar, who has hypoplastic left heart syndrome, with his wetsuit on. It really has made an incredible difference to us and to him. He no longer goes blue in the pool and has started loving swimming as we are now able to go so often - thanks to the wetsuit!”

Water baby Eleana “Thank you for Eleana’s wetsuit. This is her first holiday and first time on beach.

She has had a full heart repair (five times!) on absent pulmonary valve and large VSD, she has a tracheostomy and ventilator to aid her breathing because her heart is so big it collapsed her airways/lungs. But finally she is improving and so now we are starting to enjoy life.

Eleana had never been swimming or on holiday (she’s 4) because of her health and being hospitalised for most of her life.

You’ve taken one worry away (getting too cold when wet due to her heart condition).

Thank you!”

Water baby Bobby

“We have just returned from a week’s holiday in Minehead, where Bobby got to try out his wetsuit.

It was amazing he really enjoyed the pool and his colour remained the same, no blueness at all, it kept him warm.”

FREE Wetsuits For Heart Children!

Heartline offers a free wetsuit for a child who is registered on our database.

All applicants will be checked by our office before wetsuits are ordered and sent out.

To request your free wetsuit, you must be an associate member of Heartline Families, which is also free.

Once you have been accepted and processed as a member, you can order at www.heartline.org. uk/joining-us/wetsuits and your child will be splashing around before you know it.

You will find the application form to join on our website at www.heartline.org.uk.

Please do send us a photo when you get your package - we love to see our suits in action!

Boost for Wetsuits for West Yorkshire Families!

A huge thank you to The Barbara A Shuttleworth Memorial Trust, which has awarded £520 to Heartline to help us provide wetsuits to heart children across West Yorkshire. The donation enables us to offer a fantastic 40 suits to heart children in the region. We will be spreading the words to reach families in need. Please get in contact if you live in the West Yorkshire area.

The funding will help us to stretch our wetsuit budget to meet demand throughout the UK. The Barbara A Shuttleworth Memorial Trust awards grants to improve the lives of disabled people, especially children.

Why do heart children get so cold in the water?

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Heartline’s Hazel Greig-Midlane explains the benefits of wetsuits and exercise for children with heart conditions.

“Many heart children have not been able to enjoy benefit from and (just as important) enjoy, even those playing or exercising in water. This is sometimes because too breathless for physical games, or on medication that their poor circulations cause them quickly to become excludes them from contact sports. cold even in heated pools. There are a variety of medical consequences of heart conditions that lead to Some children are very conscious of their scars from this lack of control of their body temperature. In CHD open heart surgery that make them different and so the heart is already working harder to maintain reluctant to remove their clothes in front of others. sufficient oxygenation and the body’s core temperature. The provision of a wetsuit gives them a freedom to The cooling effect of water increases the effort needed. participate in physical and social activities they would Often the child will feel uncomfortably cold with not otherwise have, even just having fun on the beach shivering and blueness after only a few minutes in even if not swimming or paddling in the sea. Careful exercise warm water. And sometimes parents think their child may improve their medical condition and certainly is not ‘allowed’ to play in water because of their heart assists in helping them combat infectious illnesses.” condition. Swimming is exercise heart children can

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Lola’s Story

wish I could swap places with her but this operation will help her and now let her grow and get on with the life she deserves.

By Amy Prangley

Let Them Eat Cake!

A big THANK YOU to Kelly Caldwell and Olivia, and the staff and pupils of Notre Dame Greenock for hosting a Wear Red Day. Kelly made these lovely cakes for a guess the weight competition. As Kelly said it should probably have been ‘Guess the Calories’, but how yummy they look!

Thank you from Heartline.

During my 20 week scan, the sonographer told us she was having trouble locating all the valves she needed to see in our little girl’s heart and, so, was transferring us for a more detailed scan.

We had to wait five weeks until the scan. The detailed scan finally revealed that our daughter had congenital heart disorders, namely Pulmonary Atresia and a VSD. We were both devastated.

I asked myself “why me?” What had my child possibly done to deserve to be unwell before she was even born?

We had frequent scans at the University of Wales hospital and growth scans at our local hospital. Lola grew normally throughout the pregnancy and all was as well as we could expect.

She was born at St Michael’s Hospital, Bristol, on 15th August 2014. She was taken straight to NICU and immediately put on Prostin medicine. Four day later she was transferred to Bristol Children’s Hospital, where she had an echocardiogram. It was at this time that the diagnosis changed to Pulmonary Stenosis with VSD – the difference being that with Atresia there is no artery from the heart to the lungs and Stenosis is a narrow artery from the heart to the lungs.

Lola will be undergoing her surgery at Bristol Children’s Hospital soon, where they plan to patch the artery, which it is hoped will grow with her.

You are definitely not alone

Our families have been extremely supportive to us through such a tough time. Lola has two sisters, Carly and Charlotte. They are excellent with her and help us out tremendously. I would advise any new parents who are told their unborn child has a heart defect to not feel alone – you’re definitely not alone. There are so many other families going through this and so many support groups on social media and online. I am nervous about our princess having to have surgery and

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Terms Used:

Echocardiogram: scan of the heart.

VSD: hole in the wall between the ventricles, the pumping chambers.

Prostin: given to keep open a blood vessel called the ductus arteriosus.

MedicAlert In the event that your child needs emergency treatment, the MedicAlert emblem is engraved with your child’s medical conditions, personal identification number and MedicAlert’s 24 hour emergency number.

Heartline is now an official partner of Medic Alert and can offer a discount of £19.99 on a first bracelet.

This discount is for members only and can be obtained by contacting admin@heartline.org.uk (please put MEDICALERT in the subject line).

Daisy’s Walk Daisy Parkin and her cousin Grace helped to raise a fabulous £205 for Heartline by undergoing a 3.3 mile walk along the beautiful Worthing seafront and pier. The girls carried out the walk for Children’s Heart Day and barely noticed how far they had walked as they spent lots of time chatting and giggling!

Daisy was born with Coarctation of the Aorta, VSD, ASD and Transposition of the Great Arteries. Her family have been members of Heartline since Daisy’s birth in 2005. She has received fantastic treatment under the care of Dr Rigby at The Royal Brompton Hospital and is doing really well.

Thank you so much and well done girls!

Thanks in memory of Ashley Burt Heartline wishes to express its thanks to Carl, The Appletree and family, and friends for raising £530 in memory of Ashley Burt.

The funds were raised over two memorial darts’ days by the family.

Thank you for your support and kind thoughts.

Can you help Heartline?

Skydiving, coffee mornings, marathons or sponsored silence. There are lots of ways you can help raise muchneeded funds to support us. Please get in contact if you would like more information or if you’re planning to hold a fundraising day. We have balloons, collections boxes and much more to help. Alternatively, you can give online, please see Heartline pages on Virginmoneygiving.com, or justgiving.com or get sponsorship forms from Heartline. Make a donation direct – use the buttons on the Heartline Families website or send a cheque.

Pay directly into the Heartline Lloyds bank account Sort Code 30-96-96. Account Number: 59276960.

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Being a heart dad:

a personal reflection

What it’s like being a heart dad. By Christopher Walton Tetralogy of Fallot? Tetra-what? Fallot? Like a field?

No… it’s congenital heart disease. It’s a pulmonary stenosis. It’s a ventricular septal defect. It’s an over-riding aorta. It’s a thick right ventricle. The dim and distant memory of GCSE Biology (scraping a B in 1996) utterly failed me on 10 December 2013. The diagnosis, at King’s Hospital during a routine heart scan at 20 weeks because my wife had gestational diabetes, was way outside of any realm of understanding that I could muster.

They were just big scientific words, some of which may or may not have been Latin, that would turn my life, my wife Katie’s life and our unborn daughter’s life completely and utterly upside down.

Shock, tears, swearing

What it meant was shock. Tears. Swearing. Low moments.

Fear. Dread. You name it. My wife and I experienced it in the weeks that followed. Following the initial diagnosis we were lost. We did not know what had happened to us.

Where we were going. What was going to happen. The consultant and the surgeon were phenomenal. They handled telling first-time parents such crushing, life-changing news, with intelligence, compassion and grace. We had no idea. We’d just turned up for a scan. My major worry before that point had been making sure that I asked for a copy of the photograph this time (because I’d forgotten last time). Before we knew it we were being informed about potential, associated chromosomal defects.

Emergency amniocentesis

My wife was taken into an emergency amniocentesis and we were being warned that the procedure was risky for the unborn child we’d spent two years trying to conceive.

And we had to say “yes”. There was no option, and the flipside risk was a whole lot worse.

After the sample was taken, we got home and called our families. They had no sphere of reference to comfort a diagnosis of Tetralogy of Fallot in an unborn baby. There were no words that could reassure us if our unborn child had a chromosomal defect. We just had to wait for the test results. Christmas was utterly, utterly awful.

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Didn’t know where to turn

We did not know where to turn. Thankfully the consultant who provided the diagnosis was available on the phone whenever we wanted to answer our many and growing questions (only made worse by endless searches on Google). We called the British Heart Foundation to ask for advice. They pointed us in the direction of the phenomenal Children’s Heart Federation (nope, I’d never heard of them before that point until then) who supplied us with great information and put us in touch with other parents in a similar situation. We waited for the test results.

The results came back

Christmas came and went. We didn’t know what to do.

Termination was a serious discussion, but we didn’t want to give up. Some of the results had come back. They were clear. The relief was phenomenal. Things moved quickly.

We got into the system at the Evelina Hospital on the South Bank. We had scans there, to check on our baby’s development. She was growing fine. The heart was developing fine. We just had the realisation that her heart was plugged-in in a different way to you and I. And it would need fixing.

These were more simple concepts to get our head around.

Prepping for Matilda’s surgery

In February the Evelina organised an open day for parents of heart babies, who were facing up to the fact that their children would have to be born in this hospital. Not our local hospital. This day was invaluable in prepping us for what was to come.

We were shown all of the facilities, discovering what esoteric concepts such as SCBU or NICU – things that had been explained to us by nurses and consultants but didn’t actually mean anything - actually looked like. I knew that when my wife would be called in to be induced that we were going to live in that hospital for an indefinite amount of time. That our daughter would be whisked away from us after birth so her heart could be scanned immediately by some of the best consultants, surgeons and cardiologists in the country.

We had to prepare ourselves for the fact that she may well have needed surgery immediately after birth. And the Evelina would be the place where it would happen.

This day gave us the confidence to do that.

Meeting other heart parents

We also got to meet a parent of a heart baby. And she talked us through the first year of her son’s life. And what happened during his surgery. She showed us pictures of him in intensive care.

Full of wires and tubes just hours after coming out of theatre. We had to face the fact that this would happen to our unborn daughter too, at some point in the first year of her life, and it could be measure in minutes or hours or days or months. Then she showed us pictures of him a day later. Fewer tubes. Fewer wires. Then a week later. At home. Then months later, full of smiles and happiness. Fully recovered. She and her son survived it. And that meant we could too.

The due date came and went

April came. The due date came.. and went. We had to hold on another two days until we were called in.

Here’s advice for the parents of any heart baby. Get used to waiting.

Stuff happens in hospitals. Patients need caring for and if you have to wait, you have to wait. But we did get to go in and my wife was induced. We spent Saturday evening walking the corridors of the maternity ward, hearing the screams of mother’s giving birth from room to room. We watched the sun set over the heart of Westminster.

Things start to move

The next morning, my wife was administered an epidural. Any pretence of the kind of birth that would make the NCT proud went out of the window. This was a medical procedure. Our baby needed to survive labour with her heart working properly. There were monitoring machines and wires. It didn’t matter. It was all about getting her out safely.

Things moved slowly. Then, late afternoon, our baby’s heartrate dropped suddenly. A theatre was prepped quickly. Medical teams had heated and speedy discussions. The number on the screen rose. Things calmed down. The number dropped. We were in for an emergency caesarean.

Utterly beautiful - and pink

We heard a cry. Our daughter had been born. Then she was taken away for checks. We didn’t know what was happening. We would later find out that her vitals had dropped, before being revived. In many ways, we were glad we didn’t know. We got to see her face briefly.

Bright, full eyes. Utterly beautiful. And pink, and breathing. And she was taken away for her scan.

She didn’t need immediate surgery

Hours later the cardiologist came to see us. Our daughter was okay. She did not need immediate surgery. She was going to be monitored closely. We were lucky. We were able to call friends and family and tell them that they were uncles and aunties and grandmas and grandpas. And we weren’t out of the woods yet.

As a dad I got to go downstairs to NICU (Neonatal Intensive Care Unit) and see my daughter for the first time. My wife had to wait in bed upstairs as she was recovering from pretty major surgery. In fact she wasn’t able to see her until lunchtime the next day. That was a moment to stand strong as a father, and a husband, and support your family through some pretty traumatic moments.

Naming our daughter

But we got to see her, and name her – a process we were putting off until we knew she was okay – so Matilda came to be.

Both my wife and daughter spent six days in hospital. Lots of waiting. Lots of checks and scans.

Eventually we got to go home.

With a daughter who was fine.

And we spent two days at home, until we had to go to our local hospital where she was admitted after losing a fair chunk of bodyweight. She spent 24 hours in an incubator, we spent two nights in a sparse NHS furnished room for parents to help nurse her back up to a healthy weight and get some antibiotics through her system. And we went home again. It was a process we would have to get used to.

Blue mouth and nose

Matilda would have more scans at the Evelina, to check her development. She was growing. But in the summer we started to notice that her mouth and nose would turn blue every so often. It kept happening. And we got worried and eventually convinced ourselves to go to A&E again. She was admitted overnight so her oxygen sats could be monitored.

The shock of surgery

She was released the next day. Later in the summer her surgery was scheduled for early September. We knew that it had been coming. We’d tried to prepare ourselves the best we could. But it still came a shock. It became more real, the concept of open-heart surgery on our daughter, who we were just getting to know. It led to many sleepless nights and anxious moments.

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Surgery cancelled

One Sunday evening in early September we spent the night in a room in St Thomas’ hospital, knowing her surgery would be at 8am on the Monday morning. We went onto the ward. And waited. And waited a bit more.

Several hours into waiting, Matilda was screaming the hospital down with hunger. And eventually we were told that the surgery was cancelled. On Friday of that week we tried again. We drove to the hospital in the pre-rush hour dawn of London. We were on the ward by 7am. And there was more waiting. And more of Matilda screaming because she was hungry. Finally at just gone 11am she was called down for surgery. It all moved quickly. We had to go into the theatre and say goodbye to her. We were in bits as she went under the anaesthetic. But the nurses and anaesthesiologist had seen it all before. They knew what to do and what to say to get parents through this moment. We were virtually escorted off the premises.

Told to get out. Go eat. Have some fresh air.

Being a heart dad:

A chance to meet the new members of our team...

Linda McQuaid

Chair Having started my career as a nurse at Great Ormond Street I have spent many years being responsible for children’s services and now work as an Interim NHS manager which means I have a huge amount of variety because of the different roles I get the chance to undertake. Additionally, for more than 15 years I have been a Trustee for several children’s charities - Heartline is the third and it is huge privilege to have been appointed as Chair.

My son had corrective heart surgery several years ago and he was very keen for me to be involved with Heartline.

Mehul Nathwani

Fundraising Trustee Mehul is a Chartered Accountant now with Deloitte, consulting in financial change management. He is passionate about taking a leading role in charitable and social responsibility activities, including fundraising. His father having had heart condition issues all his life, Mehul is keen to help families in similar circumstances by leading our drive to raise funds to further our objectives.

The phone rings - the head surgeon

My mobile rang and it was the head surgeon. Matilda was out of surgery. It had gone well. He said some words, that may well have included some phrases like ventricular septal defect, or pulmonary stenosis, or patch, or reducing the narrowing, but they didn’t register. The thing was she was okay.

We went to see Matilda in intensive care. Full of breathing tubes and drains and pacemaker wires and a huge translucent dressing. She was puffed up and full of liquid and drugs. We just sat by Matilda’s bedside, full of relief and happy to see our daughter.

The process of recovery

Here the process of recovery began. A process that happens with remarkable speed. Less than 24 hours after surgery tubes and wires start to come out. And you can watch that process if you’re brave enough. We did, knowing that we were just watching what she was living.

It was the least we could do for her. Her recovery was following the photographs of the little boy we had seen on the open day. It was a quiet period in the unit that early evening. We got to hold Matilda (very gently) again. We even got to watch In The Night Garden together. Things seemed normal. So much so that she would be released up to Savanah ward by midnight that night. The unit all of a sudden needed the beds.

We get to go home

Matilda would spend another three days on the ward in total. Family came to visit. It was amazing how quickly a small routine developed. Babies have a knack of doing that. Five days later we were able to go home.

It took a while for Matilda to recover properly, for us to stop giving her diuretics and painkillers, and for hiccups to not be a major and painful catastrophe. As time moved on we realised it had been a year since her initial diagnosis, and we all had survived the very worst that could be thrown at us. Tetralogy of Fallot? Yeah, I could tell you a thing or two about that now.

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New Faces at Heartline!

Andy Wardle

Terms Used:

Tetralogy of Fallot: Tetralogy means fourfold – there are four defects found together.

Pulmonary Stenosis: a narrowing at or below the pulmonary valve.

Ventricular Septal Defect: hole in the wall between the ventricles, the pumping chambers.

NICU: neonatal intensive care unit.

PICU: paediatric intensive care unit.

Clinical Relations Advisor I’m an ambitious young doctor with a longstanding fascination with medicine, business and charity. Paediatric cardiology is at the centre of why I love medicine and Heartline is a great opportunity for huge effect in the field. I am hoping to use my experiences as a doctor, researcher, charity chair, and strategy consultant to guide Heartline into a very positive future. I’m a fitness enthusiast who’s always on the lookout for the next adventure somewhere off the beaten track.

Denise Hadow Treasurer

After qualifying as a Solicitor and practising for a while, Denise moved into the commercial sector working in various countries around the world including Australia, Singapore and Switzerland. Denise has twin boys, now grown up and lives with her partner, Andrew, in Berkshire. Andrew is a long-time survivor of child heart surgery at GOSH.

Natalie Persoglio Trustee

Natalie is a marketing and PR consultant, working freelance for numerous clients and at a large northwest cultural organisation. She has previously worked in journalism, design, and as a writer. She focuses on communications for Heartline, including social media, copywriting and designing the magazine, etc. She has two daughters; Mia and Lyla. Mia has Congenital Heart Disorders.

Val Thubbron Trustee

For Mums, For Dads, For Everyone

The support and benefits we offer here, at Heartline Families, isn’t just for mums - it’s for dads, grandparents, siblings, anyone who needs it.

We are here to offer help and advice when it’s most needed regardless of who you are or how you are related to your heart child.

We have a closed and private Facebook group for members to have personal discussions, so don’t ever feel you are on your own. From discussions around feeding difficulties and holiday insurance to support around the time of surgery and procedures - we are here for you.

Membership is free, so if you know of anyone who could benefit, please point them at our website: www.heartline.org.uk/joining-us.

For the last 15+ years I have been a full-time stay-at-home mum/carer to my heart-child Alex who will soon be 16.

I have been married to John for nearly 28 years, we also have another son Jack who is 19. I am Family Support Trustee for Heartline Families. I was senior moderator on the old Heartline Forums and will be helping to set up and run the new forums when they are ready. Away from Heartline I enjoy days out with my family when possible, also listening to music. I also spend time supporting Alex in the various activities he does outside of school.

Hazel Greig-Midlane

Former Chair, Executive I have been involved with Heartline since 1983. I was working for the Government in press and publicity – largely interpreting legislation for the bewildered public, having previously worked for a research council, interpreting research for the bewildered public. Since the (pre-internet) public were bewildered by children’s heart conditions, my son’s AVSD, aortic stenosis and bradycardia gave me ample opportunity to research and explain these problems to other families – through magazines, articles for the press, Heart Children and, later, websites.

I have retired several times – starting in 1996 (early retirement of course), then from chairing government recruitment centres, then from Childrens’ Heart Federation, then from London Borough of Lewisham Marketing and Communications in 2008. Since 2010 I have been a Heartline Trustee, Vice-Chair and Chair, and with the help of John G-M, run the Heartline Office from our home of forty two years. I have now stepped down from the Board of Trustees, which I will of course continue to support as Heartline Executive. And

not forgetting the wonderful volunteers and office staff who make it possible for us to 9 support our families to the best of our ability.

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R E M M U S S E M O Here C Sunscreen, wetsuit, medicines, insurance - it’s holiday time!

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Choosing your destination

Choosing the right destination for your holiday is really important. Factors you may need to consider include:

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temperature – will your child cope with very hot or cold weather?

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transport – will your child cope with long journeys, have problems with flying and so on?

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distance from hospital or heart unit. Is it important that your child can receive medical attention quickly?

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Choosing your accommodation

Choosing the right accommodation may also be important. If your child gets tired easily or has problems walking, you will probably want accommodation that is near to any facilities you are planning to use. If you are taking medicines or INR strips with you that you need to keep cool, make sure your accommodation has a fridge.

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Information from your doctor and consultant

If you have any concerns about taking your child on holiday, contact your cardiac liaison nurse or cardiologist for advice.

Your insurance company may ask for a letter from your GP or cardiologist to confirm that your child is fit to travel. This letter might need to confirm that:

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your child’s health will not be put at risk by visiting your destination;

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your child is fit to fly; and

your child’s heart condition is stable.

You might also want to ask your cardiologist for a letter explaining your child’s condition which you could show to any doctor you had to consult while you were away. If you are going to a non English-speaking country, you may want to learn how to say that your child has a heart condition in the local language.

You could also write these words down and keep a note with you.

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Your cardiologist should be able to tell you where your nearest paediatric cardiac centre will be. You may want to take the address and contact details of this centre with you. It is always a good idea to have the contact details for your GP and cardiologist with you in case you need to get in touch urgently.

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Medicines

Your GP can advise you about any prescribed medicines you need to take with you as well as any extra health precautions or vaccinations. Take plenty of all essential medications with you. If you are unfamiliar with local medicines, you might want to take things like rehydration sachets and children’s paracetamol as well.

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Insurance

For most conditions you should have no problem in getting insurance cover for your child. Shop around to find the best deal and check carefully to see exactly what your insurance covers. Do not be afraid to ask lots of questions, especially ‘What if…’ questions. Most policies have a 24-hour emergency phone number. Take a copy of the policy with you and a note of the emergency phone number.

E111 forms have now been replaced by European Health Insurance Cards (EHIC).

You should have one of these to receive any healthcare needed when visiting a European Economic Area (EEA) country or Switzerland. You can apply for an EHIC on-line at www.ehic.org.uk or www.dh.gov. uk/travellers, by phone on 0845 606 2030 or at post offices. Remember this is not a replacement for health insurance.

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List of Travel Insurance Providers

The insurer may ask you to speak to the medical screening line. Be prepared to answer questions on your destination, how long you will be away, your child’s date of birth, the name of their heart condition and how stable the condition is.

Are you planning to take your heart child on holiday? Here are some practical tips and key advice in helping ensure it’s a happy experience for everyone.

Stability is a major question for insurers. To check how stable your child’s condition is, you may be asked questions such as: what medication your child is on; the dosage;

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airline about this and any extra costs involved before you book your flights.

Different airlines have different rules about the supply of oxygen so find out exactly

whether the dosage has recently changed;

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dates of admissions to hospital;

and dates when you have had to go to A and E. You may also need to describe what symptoms your child experiences.

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Packing before a flight

There are strict rules about what you can take in your hand baggage on flights. These rules can vary according to the security situation at the time you fly and which airline you choose. If you are in any doubt, the best advice is to contact the airline beforehand and ask.

Solid medicines like powders or tablets should be allowed in the cabin but make sure everything stays in its original packaging.

Liquid medicine in quantities of less than 100ml are usually fine although you should bring them to the airport in a single, transparent, resealable plastic bag (about the size of a small freezer bag). You must present the bag separately for examination at the airport security point.

Essential medical equipment should also be fine if you have supporting documents from your cardiologist or GP. It will need to fit into your one item of hand baggage.

If you are travelling with an INR (blood monitoring) machine, carry the monitor and the strips in your hand luggage.

The temperature in the baggage compartment of the aircraft can fall below freezing, which may affect how the strips work.

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Oxygen when travelling

If your child needs, or may need, oxygen while flying, make sure you talk to the

what they can provide and check that this includes masks or nasal cannulas for delivering oxygen. The airline will probably need information from your consultant outlining your child’s oxygen needs. Make sure that either you or one of the flight attendants knows how to turn the oxygen on and how to change cylinders or bottles.

Most of the policies for travelling with oxygen by air also apply to travelling by sea. Contact the customer services department of the line you are sailing with for information.

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Additional tips

If you are travelling by road, there may be restrictions about travelling with oxygen in some types of vehicles, on some roads.

Your vehicle insurance company should know what these are.

Pacemaker card - these may be needed at airports, and INR record if not kept on your phone.

Ensure insurance covers someone staying with the child if they are ill over the period of returning home – can be bankrupting expensive to pay for hotel and accommodation and flights back.

We hope you have a fantastic holiday!

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Keep in Touch

Do we have your most up-to-date contact details? Please complete the form on the website to update us, or email intouch@heartline.org.uk or contact us by using the details below.

Medical Terms

A full explanantion of the medical terms used in articles and features in this edition of the HeartLine magazine can be found at: http://www.heartline.org.uk/allabout-heartline-families/our-world/

Heart Children Book A practical handbook for parents‌

For the past 30 years the Heart Children book has guided parents and families through the heart condition that children may be born with or acquire, the treatments available, and how to deal with the many medical and social problems that they may have to face.

How to get your copy

Single copies are free to Heartline Families. Single copies ÂŁ7 (plus P&P). Send a cheque made payable to: HeartLine Families, or BACS receipt for payment to: Heartline Lloyds - sort code 30-96-96, a/c 59276960, with a clear delivery address to Heartline Families 32 Little Heath London SE7 8HU.

The Heart of Stars

The Heart of Stars is where we dedicate a star to remember our children.

Bereaved parents just have to let us know, and a star will shine for their child.

Please contact intouch@heartline.org.uk for more information or visit the website.

Heartline Families 32 Little Heath London, SE7 8HU

Tell Your Story

www.heartline.org.uk Telephone: 033 00 22 44 66 Email: admin@heartline.org.uk Facebook: www.facebook.com/heartlineuk www.twitter.com/heartlineuk

Please send articles, photos and feature ideas by email to trustee1@heartline.org.uk

Heartline Families is edited by Natalie Persoglio.

Heartline magazines are also available on our website Heartline Families is a Charitable Incorporated Organisation.

Registered Charity Commission No: 1153442