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Summer/Autumn newsletter

2016

Understanding Children’s Heart Surgery Outcomes Heart parents have helped drive a tool, which opens up NHS children’s heart surgery data to families. The new site is easier to understand and easier to access for parents seeking information about survival rates at hospitals across the UK and Ireland. ‘Understanding Children’s Heart Surgery Outcomes’ is a website that will help people make sense of information about children’s heart surgery. This new tool informs decision-makers and parents that hospitals should not be ranked by their survival rates because hospitals treat different patients; high performing hospitals can have lower survival rates simply because they are taking on the most complex cases. An individual hospital’s actual survival rate should only be compared to its own predicted range, which is determined by the complexity of the procedures it undertakes, among other factors.

Here Comes Summer! We offer a free wetsuit for a child who is a registered on the Heartline database. All applicants will be checked by the Office before wetsuits are ordered and sent out. See more on the website or Facebook about how to apply for your free wetsuit.

The website was developed by University College London, and University of Cambridge, in collaboration with the charity Sense about Science with experimental psychologist Tim Rakow from King’s College London. It explains a risk adjustment method known as PRAiS (Partial Risk Adjustment in Surgery). It explains a risk adjustment method known as PRAiS (Partial Risk Adjustment in Surgery). See the website in action here: http://childrensheartsurgery.info/home

Website Forum Now Open

Our new-look website, www.heartline.org.uk has been launched! We have updated the look and feel and, most importantly, the Heartline Forum has been re-launched. Together with the private Facebook group, you can now connect directly with other parents and carers who may be experiencing the same issues and concerns as you. And it’s open 24 hours a day, at times when you need to reach out most. Aside from offering a friendly ear, the forum is the place to get information and apply for member benefits, such as the caravan holidays, free wetsuits and other information about your heart child’s care. The forum (and Facebook group) is a closed and confidential environment. Please do say ‘hello’ and introduce yourself!

Like & Follow us at

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The Beginnings of Growly Bill

Get a copy of Growly Bill

Growly Bill’s adventures are availble, free-of-charge, from Heartline. Please send an email to intouch@heartline.org. uk with your address details and which copy you would like (Growly Bill at the Outpatients or Baby Bill) and we’ll pop them in the post to you.

The medical adventures of Heartline’s Growly Bill Bear have been used to help smooth many cardiac appointments and surgeries over the years, with children looking to Bill to share their fears. Sheila Barns, the mum who wrote ‘Growly Bill and the Outpatients Clinic’ and ‘Baby Bill’ has her own story about how the little bear came to be… Growly Bear comes to life

My husband and I are blessed with nine children, and I’ve always loved the moment when the new baby meets his big brothers and sisters for the first time - the look of wonder and of a rather fierce protectiveness on the faces of the younger children, the tenderness in the eyes of a teenage brother. In September 1996, when our sixth baby was due, the level of excitement in our home was rising daily - two weeks past my due date and here was Mum, still taking them blackberry-picking and pushing them on swings when would they get to see this baby?

The arrival of Baby Bill - our fifth boy!

William finally made an appearance - during a monitoring appointment at our local hospital (so much for my planned homebirth) - and we arrived home four hours later to a tumultuous welcome. So many hugs and kisses, so many pairs of arms clamouring for their turn to hold him, so much passionate discussion of possible names (this was our fifth boy!). So much love. The weather was glorious, and there was no school. My husband’s college had finally discovered paternity leave, and I sat on the bench in the sunshine, while the children ran, shouted and played. They always came back to peek into the buggy to see if William was awake and ready to be played with or talked to. It was a golden time, and it lasted almost a week. Then Mum and the new baby went away in a taxi - and didn’t come back.

Mum and baby went away

Friends stepped in and babysat, and my dear mum-in-law bravely offered to come up from Sussex and take over at home. Our evening phone call became my lifeline - the older boys (all of 9 and 7 at the time) full of cheerful reassurance - “It’s OK, Mummy, you don’t need to worry about anything - we’re all fine...”

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My birthday - and they arrived at the hospital with Dad and Nan in tow, and a wonderfully decorated cake complete with candles, which we didn’t dare to light in the canteen in case we set off the smoke alarms. William was in cardiac intensive care, post-op, still completely sedated and ventilated. We did our best with a teddy bear blanket to cover his open chest wound, the dialysis catheter, and pacing wires, but still - how would they feel - would they cope - when they saw him? I took Samuel, 4, and two-year-old Grace in first - Samuel straining on tiptoe to see into the babytherm, Grace on my hip, both completely unfazed by all the tubes and sticking-plaster, seeing only their own baby brother “sleeping.” Gracie, already his second mum, was full of concern “Oh, poor William! - can I give him a cuddle?” Oh, if only!

Giving the children a chance to talk about how they feel

Fast forward a few weeks. We’re all at home again. William’s op has gone well, he’s thriving, feeding like a trooper - I have no worries, everything’s fine. OK, so I miss the hospital so much, it hurts, and I can’t admit that to anyone because it sounds crazy - and ungrateful - and uncaring. OK, so William is waking to feed five times a night, and I’m exhausted. The children are amazing, and have coped so well, and I’m so grateful to them - but now the pressure’s off, the younger ones are clingy and demanding and bewildered by this washed-out, irritable, emotional mum who just wants to stop the roundabout and get off for a while... And I feel I need to do something - I need to give them a chance to talk about how they feel and why things happened the way they did. And I need some way of talking to them about it all without tears.

Which is where the Growly Bear family comes in...

Do I look like Mrs Bear?

Of course, no-one was fooled for a moment by the change of names: “That’s Samuel and me, isn’t it?” The baby bear’s name was ready-made - William had been re-christened ‘Bill’ by one of the young ward-round doctors; nerve damage during surgery had left him a silent baby, and his determination to make a noise had so far produced only an almost inaudible growl. And me? - Do I look like Mrs Bear? Well, I don’t know - I’m not sure about the ears...

Hey, look! They’re our bears...

About a year and a lot of very fraught hospital visits further on, I sat down with my black fine-liner again and drew the ‘Outpatients’ story for William. Sometime later I showed the books to Adelaide Tunstill at GOSH. I wondered if they could photocopy the pictures for children in the hospital. William and I had the fun of seeing ‘our bears’ carefully coloured, on the waiting-room walls on our next visit! And one day someone from Heartline phoned and asked if they could print the books for their members. It came back with a glossy cover. Hey, look! They’re our bears - large as life - on the front cover of a real book! Wow!

The original Growly Bill is now 19 years old

That was about 17 years ago. William is 19 now, studying Art and Design - but not drawing bears. He has finally graduated from the children’s hospital to the new Heart Centre at Barts. I don’t know if the bears helped, but he did get over his fear of hospital visits, and we no longer had to sedate him to survive an ECHO. By the time he had his first MRI he was so calm about medical procedures, the doctor came out of the lab to ask me if William was okay - he seemed very quiet. When he went in for his first catheter op, it was me in pieces - my eleven-year-old son taking it all in his stride. He is a hero. And I’m so thankful - to God for countless prayers answered; to the wonderful doctors, nurses, and surgeons at GOSH on whose skill we’ve depended over the years; to my husband who has kept me sane.

You’re a great bunch

What You Need To Know About Heartline Families Register now - it’s FREE If you haven’t yet registered with Heartline Families, it really couldn’t be any more simple and it’s free, so join us! Just visit www.heartline.org.uk and complete the online form. Joining Benefits Once you have been accepted as a family, you will be invited to our closed and private group on Facebook and given access to the closed forum on the website, where you can request: - information about our caravan breaks - a free wetsuit for your child - free child places on our activity holidays - the Heart Children book (the heart bible!) - support from fellow mums and dads - stacks of information about dental hygiene, fundraising, hospital vists, the magazine and - access to the forums, which carry a wealth of advice and discussion. You will also receive a copy of our regular newsletter, which is full of stories, news and innovations in the heart world. More information at www.heartline.org.uk www.facebook.com/heartlineUK www.twitter.com/heartlineUK So, what are you waiting for? Come and join Heartline Families.

And to my children - including the three youngest who weren’t around yet to be part of the Bears’ story – a huge thank you, all of you, you’re a great bunch.

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Milestones:

Starting School and Nursery

Starting school or nursery is a huge milestone for your child - and for you! With concerns about their medications, settling in and ensuring the school has the necessary information it can be tough, we hope this guide will help you prepare for this important time in their life. Sometimes nurseries are reluctant to take children with heart conditions because of concerns about how to care for them. If you have this problem, you can ask your child’s cardiac liaison nurse to speak to the nursery staff. Cardiac liaison nurses can explain your child’s heart condition to nursery staff and are normally able to reassure them about any concerns they may have. Information for the nursery It is important to give the nursery information about your child’s heart condition such as: • the name of your child’s heart condition • your child’s medical history including details of all the surgery they have had • the names of any drugs your child is taking • any side effects of drugs (for example, going to the toilet often, sensitivity to the sun, bleeding or bruising) • any symptoms your child may have such as blueness, tachycardia (a fast heartbeat), breathlessness and so on.

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Heartline magazines are also available on our website

www.facebook.com/heartlineuk www.twitter.com/heartlineuk

If your child does have symptoms such as blue spells, tiredness or breathlessness, explain to

www.heartline.org.uk

the staff what these mean and how best to deal with them. Again, your child’s cardiac liaison nurse (CLN) can be very helpful as they are trained to advise teachers and can often visit schools and nurseries.

Please get in touch with your story, feedback and comments at trustee1@heartline.org.uk This newsletter is edited by Natalie Persoglio.

MedicAlert Jewellery A MedicAlert bracelet can be a useful extra reminder about your child’s heart condition and other specific information such as allergies. The MedicAlert bracelet is also useful in emergencies to let medical staff know about the problem. To find out more about these bracelets, phone: 0800 581 420 or visit www.medicalert.org.uk. Special educational needs Some children with heart conditions may also have developmental and learning delays, problems with communication or behaviour issues. If you think your child is experiencing difficulties like these, they may have what are called ‘special educational needs’. This means that they will need extra support at nursery and maybe later on when they start school. All nurseries must support children with special educational needs under the National Standards for Daycare. If you think your child will need extra support at nursery, you can ask to speak to your child’s teachers or SENCO (special educational needs coordinator). They will discuss your child’s needs with you and assess them. Settling-in Sessions Some nurseries and schools are happy to help your child by offering ‘settling-in’ sessions, to allow your child to become comfortable and familiar with their surroundings before attending properly. Speak with you Local Education Authority for more information or contact your chosen nursery to discuss options.

Heartline Families is a Charitable Incorporated Organisation. Registered Charity Commission No: 1153442

For Mums, For Dads, For Everyone A little each month

Help us from home or at an event with Heartline collection boxes With your help collection boxes can raise us a lot of valuable income. Small amounts from many collectors add up to a lot. We can send you a collection box to keep on the side in your house and whenever you have a few coins you can spare just pop them in the box. You will be surprised how it accumulates and when you have a full box then break it open and pay into your own bank and send us a cheque or bank transfer to: Heartline Families, Lloyds Bank, Sort Code 30-96-96, Account Number 59276960 for the amount you have saved up. Clearly mark the transfer or cheque with your name and ‘Coll Box Donation’. Contact treasurer1@heartline.org.uk and we will send you a Giftaid form at the same time.

By just giving a little each month, you could be helping to continue the circle of support that HeartLine offers. Please look out for opportunities to donate regularly, or contact us for our details to set up a Direct Debit; whatever the amount. Contact the office at: intouch@heartline.org.uk. See fundraising information at: www.heartline.org.uk

We can send you collection boxes for your fundraising event or to place on an agreed site. We need to record where the sealed boxes are placed and to follow a simple procedure to oversee the collection and banking of the proceeds, issuing a receipt and thank you to the siteholder as required. Please contact our Trustee Treasurer at treasurer1@heartline.org.uk and we will arrange for sealed and numbered boxes to be sent to you and to register the necessary details on our records. This is straightforward to do and our Treasurer will follow up at an agreed or appropriate time.

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Can Parents Experience PTSD From Their Child’s Heart Condition?

Written by Barb Roessner When most people think of post-traumatic stress disorder (PTSD), they imagine military veterans returning home from combat. Soldiers have been so exposed to human tragedy, their minds become conditioned to fight or flee, and surprising things—a firework exploding, someone dropping a book on the bus—could transport them back to the battlefield without warning.

During that period, parents are on edge. They are constantly wondering when, or if, their child will receive a new heart in time. Then, they are faced with close calls that trigger their stress level to spike even higher. From complications, side effects and extended waiting times, the pressure is often constant.

Struggle with constant anxiety

People with PTSD can have trouble sleeping and struggle with constant anxiety. They feel like they’re on alert every second and struggle with memories of the traumatic events that are vivid enough to feel as if they’re happening to them again. But PTSD doesn’t just affect veterans. It can develop in individuals who have experienced any type of trauma— including parents who are watching their children struggle with a serious heart condition.

The agony of your child’s illness

No, they are not in the midst of violence. And no, they are not bearing the medical burden of the heart condition. But the parents feel the agony of their child’s illness as if they are going through it themselves. They may always fear a meeting with a doctor, having heard the worst there before. Or they might forever associate their child crying in the night with a moment when the disease was especially trying.

All heart families have PTSD

Honestly, I think all families of kids with heart conditions have PTSD to varying degrees. Think about it: the official definition of PTSD from the American Psychiatric Association doesn’t only include those who experience the trauma, but also those who witness it.

Extended waiting

As time goes by, the wait wears on parents, and it doesn’t get easier. That could be because one of the key risk factors for PTSD is feeling powerless. For parents in any of these situations, when it’s a child— your child—you might as well be in the throes of a violent assault. The stress response is about the same. I’ve only mentioned the medical complications. Let’s not forget about the strain on marriages, the financial burden that leads some families to bankruptcy and the issues that can arise with other children.

Why Addressing PTSD is So Important

The long-term issues of unchecked PTSD are serious, mainly because a prolonged fight or flight response is so taxing on the body. Think about it: Your body is gearing up to protect itself from what it perceives to be an attack. The heart rate spikes to get more blood to your muscles, according to the National Alliance on Mental Illness. Breathing speeds up, sometimes to the point of hyperventilating. Blood sugar spikes. If the body experiences this stress response too much, it could develop into long-term problems with high blood pressure.

For families whose children have serious heart conditions, the parents’ stress level is high and rising all the time. We have cared for some families in which one or both of the parents sought treatment for PTSD. This usually happens during the waiting period: that time between being placed on the heart transplant list and actually getting a heart.

6 Roessner is Physician Assistant and coordinator of the Heart Failure and Transplant Program at Children’s Hospital Barb & Medical Center in Omaha.

There are several ways parents can prevent the stress of traumatic experiences with their child’s heart condition from developing into PTSD. Here are five ways to address potential PTSD in yourself or your spouse if your child is grappling with a heart condition:

5. Take care of yourself

1. Speak up and ask for help

There’s still a stigma around admitting that you could have a mental health issue. Many people regard it as a sign of weakness, even if it is not. But you don’t have to prove that to anyone. If you’re front and centre, helping your child get through a serious heart condition, no one can question your strength. It’s already obvious. This is especially important for fathers. Dads of children who have been hospitalised in intensive care are more likely than mums to meet the criteria for PTSD four months later, according to a March 2009 study in the journal Psychosomatics. If you are noticing signs of PTSD, consider at least meeting with a counsellor. That way you can determine if further therapy is necessary.

2. Have a support system

I’ve noticed that the stronger the support system parents have, the better they are able to handle the traumatic events that happen during their child’s heart condition. For one, they have more people they can tap for help with things like caring for other children, transportation and finances. Also, if you decide therapy is best for your symptoms, support from loved ones can make that therapy more effective, according to the National Institutes of Mental Health. Supportive loved ones can also help you identify and address triggers for PTSD symptoms.

3. Take advantage of your hospital’s mental health resources As a children’s hospital, we know that it’s not enough to just help the child. The parents and siblings are going through this, too. We have therapists on site who can treat family members who have PTSD. Every hospital is different, but check with your child’s hospital about their on-site resources as well, especially if you’re spending a lot of time there while your child is in treatment. If they don’t have resources right at the hospital, ask if they can refer you to a mental health expert who is familiar with PTSD in pediatric heart patients and families.

4. Speak up and ask for help

Many of our families are on the other side of the trauma. This means their children have experienced the worst of their heart conditions, and they’re now on the road to being healthy, active kids. When you ask their parents what got them through, many will point to their faith, whatever guise this may take for you. This isn’t necessarily religion, but can be the comfort of your own beliefs.

Remember that your own health is still important, too. Proper nutrition, adequate sleep and regular exercise are the best line of defence against most health conditions, including PTSD. Even if your child is hospitalised, you, as the parent, have to find a way to take care of yourself. A journey this stressful means your body needs all the help it can get to stay healthy.

What are the best practice guidelines for treatment? NICE (National Institute for Health and Care Excellence) recommends that if you are offered psychological therapies such as CBT or EMDR, you should: - be offered sessions on a regular and continuous basis by the same therapist for 8–12 weeks, with more sessions if needed - be given all the information about the treatments available to make an informed decision. NICE also cautions that if you have PTSD your GP should not simply offer you a single, one-off therapy session focusing on talking about the traumatic incident (often referred to as debriefing, or single-session intervention). This is because research suggests that talking about the incident in a one-off session after experiencing a trauma is not an effective long-term treatment, and in some cases may even make your PTSD worse. Links to further information and reading: NICE www.nice.org.uk MIND (For Better Mental Health) www.mind.org.uk Mooodjuice www.moodjuice.scot.nhs.uk/posttrauma.asp Combat Stress www.combatstress.org.uk Mental Heath Org www.mentalhealth.org.uk Anxiety UK www.anxietyuk.org.uk www.counselling-directory.org.uk/ptsd.html PTSD UK www.ptsduk.org

7 HAVE YOU or ARE YOU SUFFERING FROM PTSD because of your child’s condition? We’d like to hear your story. Please contact Natalie on trustee1@heartline.org.uk.


By Sarah Wilkinson.

Oliver’s Story Born too fast

We were told due to the extremely quick delivery and me having sepsis that Oliver possibly either had sepsis or was just in shock due to being born so fast. We felt relieved. After a few hours in walked the paediatric doctor with a picture of the most perfect 7lb 9.5oz little boy. They first told us that he was breathing alone and stable. Then came the words that so many heart mums hear,

‘Your son has a heart condition.’

We were told he had tetralogy of fallot and needed to be transferred straight to the children’s hospital. I wasn’t allowed to be with him until I was better. Numb I didn’t hear another word that came out of his mouth. I just sobbed thinking about how hard we tried for him and now he could die. I sat in the bathroom nervously awaiting, what was sure to be, yet another negative on yet another pregnancy test. My partner and I had been together for three years and we were desperate for a child. My diagnosis of Polycystic Ovaries a year earlier, had made it to get pregnant. The disappointment of negative tests had become unbearable, so when this final test came up with the ‘positive’ line that we’d been wishing for, we were overjoyed.

We were finally getting our happily-ever-after.

The 12-week scan came and went. All was fine. The 20-week scan came and we were told there was no mistaking we were having a boy we decided to name him Oliver-Michael.

A niggling feeling that something wasn’t right

We were asked to come back the next week as our little wriggler wouldn’t stay still and the sonographer couldn’t get a good enough view of his heart. The following week we went back, and all was fine. Our perfect miracle was cooking away nicely. I had another three scans and, still, all was fine. Despite the reassurances, Tom had this constant niggling feeling that something was wrong but we brushed it off as normal anxiety for new parents.

Waiting for that baby cry

At 37 weeks my blood pressure was shooting up and down. After three weeks in and out of the hospital, they decided they would induce me. Three days before induction, my contractions started. After a two-hour labour, our perfect little boy was born. We waited for that cry but it never came. Instead, our tiny and fragile newborn was being pumped with oxygen and fighting for life. After eight long agonising minutes, we were told he was breathing. Oliver was taken away before I saw his face.

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Plagued with fears

My every thought was plagued with fear. Fear of how could I cope? How would I love a child I was scared of? How can I have a child who is different? Will he walk? Will he talk? Will he survive? The thought that constantly went through my mind was that I will be burying my child before me. I planned his funeral over and over again in my head. I cried every time I looked at him in fear I would never have the bond other mums have with their kids.

Something new was wrong

‘Pop him on the bed and let’s give him a quick scan before we go’, said the cardiologist. As she began to scan him, her fact changed. ‘Get him dressed and sit down while I make a phone call.’ She picked up the phone. ‘Get Oliver a bed ready, get him started on prostin and get him transfered now,’ she said. We knew something was wrong. She explained Oliver’s heart was worse than they thought.

His situation was critical

The main concern was that his left lung wasn’t connected to his heart at all and the duct feeding it was about to close. He was critical and needed emergency care. We were quickly rushed back into intensive care and the next few hours were a blur. It was time for his surgery, and our nightmare began all over again. As the ambulance doors closed, I fell to the floor and couldn’t breathe. I felt sure he was going to die and there was nothing I could do.

Six long hours

By 9pm we were finally reunited. The next few days were full of tests. He needed surgery as soon as possible. At six days old, we made the longest walk of our lives. We walked him down the corridor and placed him in the hands of the surgeons. After six long and agonising hours he was back. He was alive. His chest was closed and all had gone well.

A tiny miracle

We went to ICU to see him. His beautiful face was barely visible beneath the tubes and wires. Our tiny fragile baby looked so frail. Hour-by-hour he amazed us and, thankfully, within a week we were home.

Ready to go home

At five days old, we were told the news we never thought would come, Oliver was ready to go home. I felt sick with joy and fear. We rushed home to get everything sorted. We shared our amazing news with everyone and were over the moon.

Home at last with this tiny miracle. Quickly we settled into a routine. The fears of not loving him? Gone. The fears of being scared to be alone with him? Gone. The fears of his future? Still there lurking at all times. We dreaded every monthly check-up.

His perfect chest

That night I couldn’t sleep. I just lay and stared at him. I cried every time I looked at his perfect chest at the thought he would have a scar. The fears inside me were still there and strong. The next morning after a perfect night we woke. Handed him back to the neonatal nurses for the last time, as we quickly took all our stuff home before his appointment. We met with the cardiologist to decide on a plan regarding surgery. We sat with her, and was told he would need surgery when he was around eight months old. Although this filled us with dread, we were able to take him home and enjoy him for eight months.

He thrived

Oliver thrived. He was doing so well. At 10 months old, we began the same nightmare. He fell sick, he was so fragile and ill. Once again rushed into hospital and back into surgery. This time they did a full repair. After another long six hours he was back. Yet again he thrived. Within six days we were home.

Oliver now

Oliver is now 2 years old and is doing amazing. He has had one smaller procedure but is thriving each and every day.

The nightmare is a distant memory

As I sit here and write this, the nightmares we went through are a distant memory. The fear for his survival? Gone. We can know sit and talk about his future without the fears as we know there will be no taking him away. Oliver’s life will be full of surgery but I know what a strong, beautiful and perfect boy we have and how he will kick CHDs bum time and time again.

Terms Used ICU - intensive care unit Prostin - a term used to describe a problem with the heart’s structure and function due to abnormal development before birth. 9


James, My Beautiful Grandson

By Denise Tunster

The eve of James’ surgery

The night before surgery was terrifying as all the thoughts and possibilities came crashing in. I looked after my son and daughter-in-law’s farm and animals, while they went into the hospital to be with him. As I am writing the grief is now able to flow. James had a successful heart surgery with a repair of the VSD only. The other defects are considered minor and unlikely to cause any further issue.

James is allowed home!

James is my beautiful grandson. He was born a month early, on 15th January 2016, after he stopped gaining weight in the womb.

We couldn’t believe that James was allowed home after just one week in the hospital. Delighted parents and grandma have watched James as he is eating well, sitting up holding his head up for the first time. Alert, bright and still his sociable joyful little self. I’m delighted and look forward to my next visit three weeks today.

A heart condition

The day after he was born we discovered that he had congenital heart disease. He struggled to breathe and was slow to any weight, despite his mum breastfeeding alongside his NG tube.

He is the sweetest natured little boy. He now lives in Sweden with his mum and dad. I was able to visit them a few weeks ago and, the day after my arrival, James was deemed a priority for surgery, as he was in heart failure and his heart was enlarged. He was taken into hospital a few days into my visit.

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Could you help in some way? No matter how small or large, we appreciate your support. If you think you can help raise funds, please get in contact with the office intouch@heartline.org and find out how we can support you with balloons, stickers, raffle prizes and collection buckets. Here are just a few ideas to get you thinking about how you can help.

3. Ask your child’s nursery / school to support us – nurseries often have fundraising open days and choose a new charity each year.

The heart scan

4. Why not auction off your talents for the day or donate a percentage of funds raised through an eBay auction?

Terms Used

ICU - intensive care unit NG Tube - Nasogastric tube - a tube through the nose and into the stomach. VSD - Ventricular Septal Defect - is a defect in the ventricular septum, the wall dividing the left and right ventricles of the heart. Tetralogy of Fallot - Tetralogy means fourfold – there are four defects found together.ventricle and the pulmonary artery.

7. Ask your local supermarket to run bucket collections or, if you have some willing volunteers, set up a bag-packing fundraiser.

Wetsuits, subsidised holidays and get-togethers are all made possible by the hard work that our members put into raising much needed funds.

2. Take part in a sponsored silence (good one for the kids!), run a marathon or do a bungee jump!

His cardiologist told James’ mum and dad that he had Tetralogy of Fallot, that he may grow up with many disabilities and possibly wouldn’t be a very good candidate for heart surgery.

Sweetest nature

Heartline Families relies on fundraising by its members to allow us to provide practical and emotional support to our families.

1. Ask your workplace to choose Heartline Families as their supported charity for the year.

Tetralogy of Fallot

By his sixth day, they were devastated and not sure what they were dealing with altogether. After an extremely tentative first month, it was good news when all chromosomal tests came back negative. James’ heart scan and x rays showed a large VSD and a valve defect. My beautiful James was breathing around 78 times a minute and struggled to eat. Despite this, he gained weight slowly but surely.

Top 10 Help Heartline Tips

5. Double the money you raise fundraising by asking local businesses to support your cause! Contact the office if you need a supporting letter. 6. Payroll giving. Simply set up a direct debit for £1, £2, £5, etc, per month and donate tax-free. This method means for every £1 you give, the actual cost to you is 80p.

8. Set up a swear box at work, the gym or even home! 9. Do you run a shop or business? Could you spare space for one of our collection boxes? 10. Sponsored pub crawl – charge each reveller £10 and run bucket collections on your travels.

Online Giving

If you prefer to 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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Water Babies! One mum and dad tell us how our FREE wetsuit has helped their daughter enjoy the water... “Our three year old daughter, who has Tetralogy of Fallot, is such a water baby and this is all thanks to her gorgeous pink wetsuit from Heartline keeping her warm and enabling her to play for ages in the water.

grateful that we had her wetsuit from Heartline as this enabled her to spend a long time building sandcastles in the sand, running into the water and jumping in the waves.

Our daughter goes to swimming lessons every week and although the pool is heated she also needs a wetsuit to enable her to remain warm in the pool throughout the half an hour lesson. She has actually just started swimming independently and to be honest we never realised this would be possible at her young age and with her cardiac condition. We are so proud of her.

We are so grateful to Heartline for providing us with this gorgeous pink wetsuit and we hope that Heartline is able to continue to provide wetsuits for cardiac children so that other cardiac children have the opportunity to be able to enjoy water as much as our daughter does.

Recently we went to the seaside and our daughter could not wait to get into the water, despite the partly cloudy weather and so we were ever so

FREE Wetsuits For Heartline Families

Heartline offers a free wetsuit for a child who is registered on our database. All applicants will be confirmed by our office before wetsuits are ordered and sent out. To request your free wetsuit, you must be a family member of Heartline Families, which is also free and can be done by visiting the website at www.heartline.org.uk Once you have been accepted and processed as a member, you can order your wetsuit by

Thank you so much Heartline.”

Claire and David Barrow

completing the form on the website and your child will be splashing around before you know it. When ordering your website, you need to: Tell us: - Name and address of parent - Name and age of child - Size (see information below) - Preferred colour choices (see below) Classic baby wetsuits come in sizes 0-6 months, 6-12, 12-18, 18-24 months, 2-3, and 3-4 years. Please tell us your first and second preference for colour: pink, black, red, aqua, navy For older children (or larger 3-4 year olds!) you need to measure around the largest part of the child’s  chest and from neck to crotch in inches. Colour choices vary.

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Profile for Heartline Families

Summer autumn 2016  

Understanding surgery outcomes, Suffering from PTSD, real life stories and news from the heart world.

Summer autumn 2016  

Understanding surgery outcomes, Suffering from PTSD, real life stories and news from the heart world.

Profile for heartline
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