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Spring/Summer Review

2013


Contents News from HeartLine Ellie’s Story A Grown-Up Congenital Heart Buster the Awareness Bear Hits Town Heart Hero - Alex Crichton Heartfelt Thanks What We Have Achieved - Annual Report 2011-2012 Who Are We? The Trustees HeartLine: Securing the Future - CIO How to Save a Life:Pulse Oximetry

1 2-3 4-6 7 8-11 12 13 14 15 16-17

Keep in Touch

Do we have your most up-to-date contact details? Please send any name, address, email address, phone number or personal details changes to casual@heartline.org.uk

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: www.heartline.org.uk/news/terms

Next edition:

Preparing Your Child For Surgery, Spotlight on Innovative Cardiac Technology, Grown-up Congenital Heart Stories, Your Say, and lots more.


Happy Holidays! There’s still time to make the most of our rare British sunshine and book a few days or a couple of weeks away at one of our caravans! We have two static caravans, Mablethorpe in Lincolnshire and Oakdene in the New Forest, which are subsidised to help provide much-needed holidays for heart families. We are holding the same rate as last year. Low Season (13 April – 24 May, 1 June – 19 July, 31 August – 1 November). Mablethorpe is £131 per week (£32 per night). Oakdene is £158 per week (£37 per night) High Season (25-31 May Half Term, 20 July – 30 August Summer Holidays). Mablethorpe is £336 per week. Oakdene is £352 per week. To arrange a booking please contact Sheila by email thepickardfamily@hotmail.com with ‘Caravan Booking’ as the subject. Sheila will discuss the deposit, payment terms and handing over the keys.

Wetsuits Now Available for Members Only Thanks to everyone for your patience, we are currently waiting for our supplier to complete our contract to supply wetsuits to members. In the meantime, we are running a temporary solution. The offer is available to members only and all applications will be checked by the office before wetsuits are ordered and sent out. For members wishing order, please send an email to vice-chair@heartline.org.uk with the following information: • Name and address of parent • Name and age of child • Measurement in centimetres (from neck to crotch, measurement around largest part of chest) • First and second preference for colour for older kids (red, green, blue, pink) Please send requests by email only, with ‘Wetsuits’ in the subject.

Join us! Do you have a child with a congenital or acquired heart defect and need support? We can offer subsidised holidays, wetsuits for chilly heart children, a free copy of the Heart Children book containing information about heart defects, discounted MedicAlert bracelets and summer party activities to our members. For information about how to become a member (it’s free), see our website at www.heartline.org.uk and complete the online form.

Get Social! We now have more than 700 friends on Facebook and hundreds more on Twitter. Join us for chat, up-to-the minute news and debate. www.facebook.com/heartlineUK www.twitter.com/heartlineUK

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Ellie’s Story Ellie was born on Christmas day 2011 - the best present ever. She weighed 10lb and appeared fit and healthy. However, Ellie’s breathing always seemed a little laboured and erratic. As Ellie got older her skin became mottled and she began bringing most of her feeds back up, she became very sweaty, tired and had blue lips after feeds.

Heart murmur

At her six-week check (the appointments came late so Ellie was eight weeks old) the doctor asked if we had any concerns. I said we were still concerned about her breathing even after doctors and health visitors had told us it was fine. The doctor examined Ellie and thought that she had a heart murmur so referred us to Bath RUH.

Reflux – misdiagnosis

We had previously been told that Ellie’s breathing was heavier because she’s was a bigger baby, that the projectile vomit was likely to be reflux or colic, the blue around her lips was wind as it occurred more after feeds and some babies ‘just have’ mottled skin. All of which was wrong in Ellie’s case. At Bath Royal United Hospital on Tuesday 22 February 2012, we were told it was not a heart murmur and that Ellie had Common Arterial Trunk (Truncus Arteriosus) and would need open heart surgery to save her life. I saw two doctors about Ellie’s breathing and spoke to the health visitor about her it on four occasions, all of which reassured me that she was fine.

Later stages of heart failure

Ellie was in the later stages of heart failure and was finding breathing a really effort. We were so lucky that the doctor listened to Ellie’s heart and my concerns. We wouldn’t have had to go through all this if Ellie had been given a simple pulse oximetry test – it would have picked up Ellie’s condition as her oxygen level at rest was 70% when we arrived at hospital.

Our little fighter

We were transferred to Bristol Children’s Hospital on the 23 February 2012 where Ellie had open heart surgery on Friday 2 March 2012. Ellie has done amazingly well only staying in intensive care for 4 days after the big op!. She was off the oxygen by Thursday 8th March. Then feeding tube was removed on Friday 9th after some problems feeding Ellie decided breast is best and resumed breastfeeding which enabled us to go home. We were discharged on Saturday 10th March 2012, 19 day after being admitted. We are so proud of Ellie she has proved what a fighter she is!  Ellie is now 16 months walking, talking and a very busy baby. Her last check up showed that she has lots of small holes in her heart, but the repair was a success and there is not further treatment needed at the moment. When Ellie grows she will need another repair involving open heart surgery and she may need the holes in her heart repaired at some point.

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What is Common Arterial Trunk (Truncus Arteriosus)? Truncus Arteriosus (TA) means that there is only one artery carrying blood away from the heart instead of two. Your child should have a pulmonary valve and pulmonary artery to carry blood to the lungs, and an aortic valve and aorta to carry blood to the body. Instead there is a single large valve, in place of the pulmonary and aortic valve, leading to one large single artery, which then divides into the pulmonary artery and aorta. There is also a large hole between the left and right ventricles: a Ventricular Septal Defect (VSD). You may be told that your child has type one, two or three TA, depending on where the pulmonary arteries arise. These defects result in a mixture ofblue deoxygenated and red oxygenated blood being pumped to the body and there is a very high blue and red blood flow to the lungs, making your child breathless, liableto repeated infections, and poor weight gain. Medicines may help but open heart surgery is needed in the first weeks of your child’s life to prevent high blood pressure in the lungs (Pulmonary Hypertension) damaging them permanently.

3. Prompt bystander assistance with defibrillation and CPR can increase the chance of sudden cardiac arrest survival from 5-50%.

3-9 June 2013, Hearts & Goals Join hundreds of individuals, groups and organisations across the UK and help raise awareness and promote better understanding of heart rhythm disorders. This year’s theme for Heart Rhythm Week is Hearts & Goals, which aims to raise awareness of sudden cardiac arrest, the UK’s number one killer, claiming 100,000 lives each year and of the life-saving difference that can be made with CPR and an AED (automated external defibrillator) to survival.  

Did you know?

1. Sudden cardiac arrest claims 100,000 lives each year. 2. Following sudden cardiac arrest, early defibrillation is essential to restart the heart and CPR can keep the person alive.

What can I do?

Whether you are working, learning or playing, there are many ways to get involved in Heart Rhythm Week! 1. Give information to your friends and family. 2. Display information in your local community by organising an awareness display in your local medical centre, nursery, hospital or leisure centre 3. If you are a patient, share your story for Heart Rhythm Week. Heart Rhythm Week generates a lot of media interest nationally, regionally as well as locally by you. If you think you could help, share your story  

How can I get involved?

It’s easy! Order your free Heart Rhythm Week pack online through the Heart Rhythm Week website: http://www.aaaw.org.uk/order-materials

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A Grown Up Congenital Heart Kim Botham was born in 1988 with Transposition of the Great Arteries, Double Outlet Right Ventricle, Pulmonary Stenosis and a VSD. Now 24 years old she talks about what it’s like to grow-up as a heart child and the incredible support from her family and friends to raise money to pay for her operations. My name is Kim Botham, I am 24 and live in Sheffield, Yorkshire. I was born on the 4th December 1988 after a perfectly normal and healthy pregnancy. After I was born the midwives and doctors realised that I had a heart murmur and also showed some of the markers for Downs Syndrome. I was tested for Downs Syndrome and when I was two weeks old the test result came back ‘negative’. I did however have a heart murmur.

A ‘quiet’ murmur

My parents took me to the doctors regularly and were told that I had a ‘quiet’ murmur, which was more than likely a small hole, which would close on its own. At three months old I had a heart scan, which revealed that rather than a small hole I had Transposition of the Great Arteries, Double Outlet Right Ventricle, Pulmonary Stenosis and a VSD. I was referred to the surgeons at Killingbeck Hospital, in Leeds.

Raising money to pay for surgery

At that point it was unclear whether I would be a corrective or palliative surgical care case (Mr Watterson rightly said he wouldn’t know until he got in). Unfortunately, back then the units were stretched to their max. I waited until I was four years old to have my surgery, by which point I was very ill. My parents had to pay privately for this surgery as I would have more than likely died waiting. I owe my life to the many people who raised the money for me to have my operation; there was everything from race nights to people running the New York marathon!

Repair not possible

It soon became apparent that repair was not possible for me therefore I had a Glenn Shunt. Ten days later, I was home and impressed my parents with my skills on a tricycle – something I hadn’t been able to do before my surgery. At that point it was believed that I wouldn’t be a candidate for Fontan surgery. From then on life carried on for my family. I thought I was very well and coped well with my heart condition thanks to a wonderful group of friends who looked after me.

Heart rate in the low 30s

It wasn’t until I was 13 and had a 24 hour tape that the surgery worry started again. I had complete heart block and unfortunately my heart rate was dropping to the low 30s when I was asleep. At this point I thought I wasn’t symptomatic of my heart condition and as a teenager the prospect of surgery was very frightening. The surgeons decided that because my heart condition would require my chest to be opened in order to put in a pacemaker that it made sense to try and attempt Fontan.

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Decided against surgery

Unfortunately, at this point I decided against surgery. While I was still a child, the decision now had to be mine as I was aware of the risks. Looking back I did struggle at school especially in comprehensive school, but I managed to attend mainstream school and left comprehensive school with 13 GCSEs grade A-C including 3 As. I then went on to study English Literature, Psychology and Maths at college. It was while I was at college that I transferred to adult congenital cardiology and at this point I decided to bite the bullet and go forward with surgery.

Time was right

There were many reasons for this one of which being that I knew deep down that I wouldn’t be able to do my dream job without the surgery but also because I knew that my Glenn wouldn’t keep me going for a for the length of time I wanted. With the support of my friends and family at aged 18 I went on the list for Fontan surgery. 10 months later on Thursday 4 January 2008 I had ‘the phone call’. Surprisingly, I was asked to go in on the Friday for pre-op to be admitted on Sunday for surgery on the Monday. I am so pleased looking back that I had short notice because I always wonder whether I would have backed out if I’d had the build up waiting for the date. I will never forget the night before my surgery; constantly bursting into tears and feeling unbelievably terrified.

Surgery lasted 18 ½ hours

The surgeon came to see me that night and got me to sign the papers and then just said “I’ll see you in the morning.” The next morning the last thing I remember is swallowing a lovely blue pill! I had my surgery on the Monday and I caused the surgeon a bit of hassle and my surgery ended up lasting 18 and a half hours. I remember very little about the next few days but some of the few memories I have is being ventilated and fighting against the tube and being told by my dad not too and then waking up looking around and thinking “Oh! I’m still alive then!”. It was such a bizarre thought. I was now a single ventricle adult. My recovery from my Fontan went smoothly. Life really began It was at that point my life really began. I realised how ill I was before surgery and now regret the fact I didn’t have my Fontan sooner… but you can’t change the past. In September 2008 I embarked upon my teacher training. After my surgery, I got involved with HeartLine and trying to spread the message that single ventricle adults are here, living a healthy and normal life. I now try to do my best to support families whose children have single ventricle conditions. Through this I met some amazing friends.

Coming to term with CHDs as a teenager

My parents are amazing and without them I don’t think I’d be here today. My mum and dad never wrapped me up in cotton wool, they knew it wouldn’t do me any good. From a young age they made me aware of my heart condition and the long term affects it could have on my life meaning that instead of having to come to terms with it as a teenager or adult I’d always known the things I might miss out on. 5 Continues.


A Grown Up Congenital Heart ... continues My mum - an inspiration and a force of nature

My mum is an absolute inspiration to me. To say she has been a force of nature when it comes to my heart condition is an understatement. She’s always pushed me to make the best out of life, wouldn’t let me sit and dwell and, while supporting me with my heart condition, never pushed me into making a decision I wasn’t happy with. She always says that the hardest bit about my last surgery was that I knew the risks whereas when I was younger I didn’t know what was going on.

The future for single ventricle adults

More recently I have been involved in the fight to retain services at the Leeds heart unit and the fight to give adults a service which matches that of the children. Some of the stories you hear about adult surgeries are truly frightening and often come from the fact adults often faces such an adhoc service which often doesn’t meet their needs. While Leeds is something I continue to fight for my main fight now lies with getting a good service for single ventricle adults in the future. I read somewhere recently that the number of single ventricle adults is expected to rise by 80% by 2030 - 2040, while this is a fact I find absolutely amazing and a true testament to the hard work of surgeons around the country, I worry that our adults service isn’t ready for that. I am now living my life to the full and work full time as a primary teacher, a job which I absolutely love! Although I know I may face more surgery in the future and I’d never deny that my life with a heart condition hasn’t been hard but I wouldn’t change it for all the money in the world. I have a heart family who I would never be without and my heart condition has made me into the strong and determined person I am today.

MedicAlert: Life-saving Accessories 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. When needed medical professionals can immediately get vital information by a telephone call from anywhere in the world. These medical records help medical personnel to make a proper diagnosis and not offer treatment which could be dangerous. The records are updated whenever you send new information. HeartLine is now an official partner of Medic Alert and can offer a discount on a first bracelet of just £19.99. This discount is for members only and can be obtained by contacting admin@heartline.org.uk (please put MEDICALERT in the subject line).

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Buster the Awareness Bear! There are so many ways to help raise awareness about the need for Pulse Oximetry testing in newborns, with one of the more unique ones involving Buster the Awareness Bear... Karen Bell decided to help build awareness of heart conditions, and the Pulse Oximetry test, after two of her friends' children became seriously ill because of undiagnosed heart conditions, which may have been detected sooner with the help of the Pulse Oximetry test. “I came up with what I thought was a crazy idea, but decided to put it out there anyway and now we now have 'Buster the Awareness Bear'. The idea is that Buster will travel across the country to attend fundraising events and signpost people to the Pulse Oximetry epetition, which needs 100,000 signatures in order for it to be discussed by MPs. In addition to this mammoth task, he will spread awareness of the Children's Heart Federation's 'Think Heart' campaign and raise money for HeartLine (and spread some fluffy cloth nappy love).   I originally got involved to help a friend (Kat), whose baby went into severe heart failure at 15 weeks and Cath, whose two year old son is awaiting a date for his heart operation. I have since then met Michelle and her son who went into severe heart failure at 10 weeks old. The babies would have received the care and treatment they needed from birth had they been screened.   We are being supported mostly by Cloth Nappy Libraries/Networks across the UK. At the moment his journey is being plotted and details will be up on our website, which will go live on the 1 June: www.awarenessbear.co.uk. We have asked for each 'host' to arrange with the next host how Buster will get to them. We are hoping he will be mostly handed over in person to give people an opportunity to meet the others involved. Kat, who is currently planning his route, is allowing a couple of days handover and he will spend a week at each location.

Kat Sparkes, Maximus and Buster Bear! CHFed are sending out info packs to those keen to help us start spreading the word before Buster's arrival. His first appearance will be on the 1 June at Drayton Village Hall, Norwich, where we are organising a special fundraiser to send him on his adventure.” If you'd like to get involved with Buster: www.awarenessbear.co.uk or email Karen at karenbell72@hotmail.com

Heart Week! Heart Week 13-19 May 2013 Look out for events near you – and if you are free on 19 May, Children’s Heart Federation are holding a party at London’s Surry Docks Watersports Centre: Dragon Boat Racing, fancy dress, puppet shows, food and children’s entertainment – 10.30 to 16.30 - a brilliant day by the River at London’s Surrey Docks!

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Heart Hero Alex Crichton By Julie Crichton

I discovered I was pregnant with Alex in November 2008, This pregnancy was my second that year. In the August I had sadly lost twins at 17 weeks due to Turner Syndrome. I was classed as ‘high risk’, which meant that I had consultant-led antenatal care. Potentially a serious problem I had a couple of very early scans and everything was progressing as it should, I remember my 12 week scan like it was yesterday. It was just a few days before the New Year was to begin. It was during this scan that we discovered Alex had a very high nuchal measurement and I was, once again, I was ushered into ‘that’ room to hear that there was potentially a serious problem with my baby. It was decided that the best course of action, after everything that had happened with my earlier pregnancy, was to have CVS done as soon as possible. Heartbroken I left the hospital heartbroken. I honestly couldn’t believe this was happening to me again. I remember my consultant telling me he was so sorry and that he couldn’t believe my luck. I went for the CVS early in the new year, but Alex being Alex was in the way of the placenta and there was no way they would manage to get the cells they needed.

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Hearing the words ‘heart defect’ It was in that room that I first heard the words “heart defect”; it was casually slipped into conversation that sometimes the high nuchal measurement is an indication of a congenital heart defect (CHD). It was decided that I would return in a couple of weeks for an amniocentesis.

I returned a few weeks later, this time they were able to do the amnio and get a proper look at Alex. I had two very experienced sonographers, who both reassured me that Alex was indeed an Alex - they were 90 % sure he was a boy even at that early stage. They also had a really good look at his heart and were pretty sure that things didn’t look right. Even at this early stage they were able to narrow it down to two potential CHDs. Welcome to the world of CHD Truncus Arteriosus Plans were put in place for a foetal cardiologist to be involved. While waiting for our appointment, my amnio came back ‘negative’ and this was a huge relief. My first cardiac scan went well and they were able to get a good look at Alex’s heart and it was confirmed he was Truncus. I was as standard offered a termination which wasn’t, and never would have been, an option. Time for a hug The rest of my pregnancy passed in a blur of scans and check ups, Alex grew well and it was felt a planned C-section in my local hospital was in Alex’s best interests. Alex was born on the 21 July 2009 at 10.01am.


He came out screaming and weighed in at 7lbs 7oz, he was quickly whisked away for a few checks but was soon returned for hugs. I was very lucky that Alex did well at delivery; we were moved to the postnatal ward just a few hours later. The day of Alex’s birth passed by in a flurry of visitors, including the proudest big sister ever!

failed due to calcification. Alex was discussed at an emergency meeting and he was put on the emergency list for surgery. We got the call a couple of weeks later that his surgery was scheduled for 4 of December 2010, plenty of time to be home for Santa.

Funny, grunting noises Amazement was expressed at just how well my CHD son was doing. That evening it was noted that Alex wasn’t feeding and made funny, grunting sounds when he tried. The Paediatrician on duty was sent for. After having my boy by my side all day, it was decided, in the early hours, that he had to go to NICU. Alex spent a week in our local NICU. The only visible signs that he was poorly were rapid breathing and failure to feed. We were transferred to our nearest cardiac unit at Yorkhill, Royal Hospital for Sick Children. Alex’s first open heart surgery Once at Yorkhill Alex was quickly assessed. After a couple of days it was clear that he was going downhill fast. On the 4 August, Alex went for his first open heart surgery (OHS) to insert a homograft and close his VSD. The operation lasted most of the day and was a success. Alex flew through PICU in a couple of days and graduated to the ward to establish feeding before going home. Alex however had other ideas and came down with a wound infection that saw him fast tracked back to PICU for a few days. Alex came home on the 21 of August. Just ‘being’ a family Alex did remarkably well at home and it was great just being a family and enjoying him. Alex was on three-monthly check ups. It was during a check up following his first birthday that the decision was made to send him for a catheter. During my pregnancy and Alex’s first year I never really Googled ‘CHD’ or looked out for support, so I didn’t think to question the catheter. I just thought it was something all heart children had and, besides, Alex was doing well. Heart-stopping words Alex had his catheter in November 2010, it was then I heard the heart-stopping words “Alex needs more OHS”. His homograft had

We arrived at Yorkhill on the 2 December and quickly settled into the ward. Scotland saw really heavy snowfall that year and, as a result, Alex’s surgery was cancelled twice over the coming days. Longest day of my life Alex’s surgery finally went ahead 10 days later than originally planned. He went down to theatre just after 8.30am and he was due back mid-afternoon. Let’s just say the 14 December was the longest day of my life. I paced Ronald Macdonald House for hours clutching a pager that never went off. Word came early evening that my son was in PICU, my mum and I raced over. We chatted to Alex’s surgeon who explained that things had taken longer than he originally anticipated, as he wanted to get the homograft to sit just right, so that Alex had the optimum life span of it. I recall laughing that he was a perfectionist.

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Heart Hero Alex Crichton ..continues

He had gone over his notes and the only issue during surgery was Alex’s temperature had gone up slightly.

My amazing boy Finally I got to see my boy who looked amazing. Alex had a very settled night and the next day they were going to take him off the ventilator. Alex came off the vent just after 10pm, he was relaxed and seemed to be coping well so I headed to Ronald Macdonald House. It felt like I had just nodded off when the phone started ringing, it was the call that no PICU parent wants to get. Alex had to go back on the ventilator after suffering a seizure and they asked if I would come over as soon as possible. I rushed over to PICU, waking my mum as I ran out of the door. As I arrived Alex was going for a CT scan

The days all merged into one and I spent as long as I could sat with Alex. My mum had come with me for support during Alex’s surgery, as his father and I were no longer together. I took the decision to send my mum home as she wasn’t coping very well. I am a very positive person and I felt she needed that break away. I also knew that they were planning a meeting with the neurologist and I knew my mum wouldn’t be able to cope.

A bleed on the brain Alex was away for what felt like forever, the consultant on duty came and explained what had happened and what the CT scan showed, Alex had been coping well off the vent but all of a sudden his nurse noticed that his sats were going crazy and he had a vacant haunted look in his eyes. A clot had got off and had travelled to Alex’s brain causing a bleed on the right hand side. Alex was immediately put in neuro protection where he was kept sedated and as still as possible. Just breathing him in I sat by his bed just breathing him in and willing everything to be ok. I stepped into the PICU waiting room to inform his father and relatives that there had been complications. While on the phone my mum came running in to get me as Alex was having another seizure. I rushed back in expecting to see Alex thrashing about the bed but he was lying so still. Alex’s seizures were very subtle; the main indications were his sats going crazy and his left hand pulsating. Alex was sent for another CT scan. This scan then showed some more damage to the left side of the brain. A blur of tests The next few hours passed in a blur of tests and information. Alex was started on antiseizure medicine and kept sedated, vented and neuro protected. We spoke about the surgery, with Alex’s surgeon, at great length.

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Significant brain damage No sooner had my mum left than I was ushered to a private room with my mother-in-law. Let’s just say that things didn’t go the way I wanted them to. Alex had suffered two massive strokes, which had caused significant damage to his brain and if he lasted the weekend - they were unsure of how he would be.


Would he know who I was when he woke up? They couldn’t answer. Would he walk? Would he talk? They couldn’t answer any of my questions. I thanked the doctors for their time and guaranteed them that this time next year my son would be walking. I then asked them to take me back to be with him. He could no longer walk, sit or talk That weekend Alex showed fantastic signs, his surgeon checked daily and was very positive and hopeful that Alex would recover. An EEG was done, which showed no seizures, so Alex was slowly taken off sedation. Signs of improvement He started to show signs of movement; his right hand trying to reach the vent, him smiling as his musical Igglepiggle played the theme tune from his favourite TV show. It was that moment I knew my son would be ok. Alex came off the vent without a problem, but it soon became clear that he had some major issues. Long road ahead Alex had gone in to hospital a normal 18 month old boy; walking and talking. Alex could no longer do any of those things.

He was soon moved to the ward. Heartwise he was doing great, stroke-wise not so great. He had a long road ahead of him. Fantastic progress Fast-forward two years - Alex has made fantastic progress. The first six months, post-strokes, Alex had intensive physiotherapy, SALT and OT. He has obviously been left with some issues - physically his main issues are his right leg and left arm/hand. Alex has poor balance, hearing loss and coordination difficulties. Alex is currently having weekly OT and SALT sessions. Local hero Alex goes to a local nursery and does remarkably well. The local press heard about Alex and in November 2011 he was nominated for a local hero award and that year he also switched on Aberdeen’s Christmas lights. It’s not until I read back on what Alex has been through that I realise just what inspirational children we have.

“It’s not until I read back on what Alex has been through that I realise just what inspirational children we have.” 11


Heartfelt Thanks HeartLine is solely reliant on the generosity of its members and supporters to enable us to keep supporting the countless heart families out there who are in need of a friendly shoulder, advice, and so many benefits to help make life a little easier in adverse times. Without these people, who spend their valuable time fundraising, holding events, donating their hard-earned money to our association – HeartLine just wouldn’t be possible. From the bottom of our hearts, and on behalf of the families and children who benefit from your kindness, we would like to express our gratitude. Donations of £3,000 and more have been made by: The Springs Golf Club      ACT                 Theo Walker Fund                            Mrs.Gay Givendolin                        Sobell Foundation                            BACCES                                          Other donations have been made by Deabill Norfolk Trust                       Ars LASS                                         Michael Shanks Trust                      BNFL                                               Birchan Dyson Bell                          Hunting PLC                                    Yorkshire Water                               Tracy Jackson                                     Isabella Blues Band                       Mrs.E.Walker                                     Mrs.E Lang                                          Wycombe Abbey School     And the many more who were good enough to send small donations, sometimes at a time of sadness in remembrance of loved ones. Thanks to all those behind the scenes who help to make HeartLine possible for the families and members who need us most. It all adds up! The incredible support we receive helps provide children with wetsuits, encourages nervous parents to involve their child in sports from an early age, helps to provide reduced-cost holidays for families who wouldn’t otherwise have the funds to take a much needed break with their loved ones, gives the gift of parent-to-parent support in times of need and helps us to provide information sheets and advice to families pre and

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post surgery, publish the Heart Children book, a source of much-needed factual advice to heart families. A little each month 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: admin@heartline.org.uk. See fundraising information at: www.heartline.org.uk


What we have achieved 2011-2012 Report

HeartLine’s financial year runs from 1 November to 31 October Despite a substantial drop in funding and little administrative input we have fulfilled our objectives in supporting families: • • • • • • • • • • •

Ran a very successful summer party Ran two activity breaks, for heart children and siblings Printed and distributed 1050 copies of Heart Children Distributed a review magazines to all members Published 3 newsletters to members to maintain knowledge and interest in HeartLine activities Recruited 198 new members Distributed 87 wetsuits to encourage children who find it difficult to maintain their body temperature to take to the water Ran two caravans for the season, implemented improved caravan booking systems. Maintained a valued message board with forums for many of the areas of interest Covered the HeartLine help and information telephone line 24/7, and dealt with all email requests for support and information Provided a conduit for parents’ views and experience for national issues

After the office closure in 2010 we have managed to significantly reduce the deficit faced by the charity. We ended the year with a £29k surplus vs an average £(23)k deficit across the prior two years. Projected income for 2013 is expected to be positive at year end.

Cash flow summary year ended 31 October 2012 Donations £51,299 Activities £14,070 Investment income £9 Total income: £65,378

Payments Fundraising activities £539 Direct expenditure £28,114 Governance £8,124 Total expenditure £36,777 General fund balance £57,994

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Who Are We? - The Trustees We thought it was about time to put faces and names to some of the people who keep HeartLine up and running. HeartLine is made possible thanks to the dedication, passion and hardwork of its volunteers and relies on the donation of members and supporters to continue. For this edition of the newsletter, we’d like to introduce you to our trustees. Left to right...

Denise Hadow •••••••••••••••••

Hazel Greig-Midlane •••••••••••••••••

Role: Trustee Treasurer of Heartline 

Role: Chair of HeartLine Association, runs HeartLine Office from home

From: Berkshire and London What do you do at HL? I will be overseeing the accounting and future structure of Heartliine as a charity. Background: Qualified as a Solicitor (a long time ago) and passed Part One of the ACCA Qualifying Exams, I have been in the conference and exhibition business in General Management, Group Finance (as Director of Legal and Tax matters), Marketing, Sales, HR. I am now consulting in strategy and management. Anything else? I have twin sons of 26 years old and a partner, Andrew, who is a healthful survivor of groundbreaking heart surgery as a baby in 1958. At regular check-ups, he continues to amaze us all.

Sofia Kelesidou ••••••••••••••••• Role: Fundraising Trustee

From: Born in Greece, lived in Manchester for some time and now living in London. What do you do at HL? I look after the fundraising side of our work. Background: My background is in market research and most recently in charity fundraising, specifically raising major donations for children’s charity the NSPCC. Anything else? I am also passionate about volunteering and have participated in activities such as events fundraising and young people’s mentoring in the last few years. My role in Heartline has been one of the most inspiring experiences as a volunteer yet.

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Next time: meet more faces behind the scenes...

From: SE London What do you do at HL? Look after policy and the day to day management of projects, deal with enquiries, edit Heart Children book, try to keep a great many records, rely heavily on trustees and volunteers for keeping things going. Background: Marketing, Research, writer, Freelance in those areas. My second child was born with heart disorders in 1981 and together with his father John I’ve been involved with the heart world ever since.    Anything else? I am supposed to have retired but do a fair amount of parent representation on various bodies (such as Medicines for Children Research Network, National Institute for Health Research).

Natalie Persoglio ••••••••••••••••• Role: Social Media / Marketing Trustee

From: Manchester and Warrington. What do you do at HL? As much as possible! I run the HeartLine Facebook and Twitter accounts, write news, update the website, edit and design the magazine and review. Background: Journalism, marketing, PR, design, project management. I have worked as a journalist and marketing consultant in arts and entertainment. I am a part-time marketing manager, and part-time PR consultant at present. Anything else? Mum of heart-child Mia (3 going on 30!) and Lyla who is 9 months old. HL is such a valuable support group that I had to help.


HeartLine – securing the future The Charity Commission offers a sustainable structure for longevity and reduced risk for Trustees through Charitable Incorporated Organisation.

We have been considering the option of setting up as a limited company but this involves a great deal of cost and time-consuming administration.

The best way forward? HeartLine’s Trustees are considering whether this is the best way forward for our Charity. HeartLine’s Trustees want to create a sustainable future for helping our families. To do this we need to have a structure that provides security for Trustees and free them from personal liability. We want to encourage the most appropriate people to take up Trustee roles and to forge a path for the future.

The Charity Commission, with the Government, has created a new legal entity called a Charitable Incorporated Organisation – a CIO.

A CIO is a new legal form for a charity. It may own property, employ staff and enter into contracts in its own name rather than in the names of the Trustees. A Foundation CIO is the model of CIO in which the members are also the Trustees. This is the model that the current trustees of HeartLine would propose to create in place of the unlimited liability Association. The Trustees of a CIO have little or no personal liability for its debts. They put up nominal capital (£1) by way of guarantee and would be liable for no more than that. They will be liable if they commit fraud of course, but have no personal liability in the ordinary course of their duties in properly managing the charity. There are more regulations for a CIO than for an Association but this is balanced by the additional legal protection of the member Trustees. The Trustees of HeartLine believe that this structure is in the long term interests of the charity, but nothing is decided, of course, until the proposal is put to all members of HeartLine Association who will have the opportunity to vote on them at a specially arranged meeting .

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What is a CIO and is it right for HeartLine?

This provides the advantages of a registered limited liability company, but without the additional burdens.

How would this structure be different from HeartLine Association? As with an Association, a CIO must also be registered and overseen by the Charity Commissioners. In terms of the legal and financial management of the charity, HeartLine would have what the Charity Commission call a Foundation Constitution with Trustees being the Members. Charity Trustees may be appointed for an unlimited time and they will probably appoint new charity Trustees. A separate membership would be set up for all those existing members of HeartLine who would retain their current rights and benefits, other than the right to vote.

Is this the way forward? The Trustees of HeartLine believe this is the most assured future for HeartLine with the greatest possibility of securing and retaining the best quality trustees. We will be providing more information on this before we move to propose the changes but this is, I hope, a helpful introduction to the concept being proposed. Those interested in further information may obtain it at : http://tinyurl.com/chrlpwp

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How to Save a Life With a Simple Test

Every year, around 5,000 babies are born with heart conditions that can have a big impact on them and their families’ lives. It’s the most common birth defect affecting 1 in every 133 children in the UK.

Sam's lips were blue and he wasn't feeding properly, yet despite me telling the nurses this I was told that it was the lights in the hospital. However because he had repeatedly failed the Pulse Ox test he was quickly taken to Birmingham Children's hospital where he undertook life saving surgery at just 3 days old”.   “Without this, I could have quite easily taken him home and his prognosis would have been very different. I’m so grateful his condition was picked up and dealt with very quickly.  It is such a simple test, it doesn't hurt your baby, it can be done at the time of the other newborn checks too”.   “Now Sam’s four and a half and he's at school full-time, he has no problems with his heart but still requires annual check ups. He's a perfectly healthy little boy who enjoys every aspect of life. Pulse ox is partly to thank for that, it's as simple as that. It helped save his life”

Unfortunately only a third are picked up before birth and many go undiagnosed, sometimes for weeks or even months. This can cause distress for the baby and family, as well as possible long term physical damage and even risk to the child’s life. However a quick, painless and cheap test is available that can detect over 75% of Congenital Heart Defects (CHD) and there is currently a strong parent led-campaign pushing for the universal introduction of the test for all newborns. The Pulse Oximetry test is carried out using a small device that measures the oxygen levels in the blood. Currently some mothers receive this test after childbirth, however their child may not necessarily. This is despite overwhelming evidence that it increases the early diagnosis of critical heart conditions and also picks up other problems such as respiratory disorders and infections. Michelle Eastwood’s, a mother of a son whose heart condition was detected through Pulse Oximetry testing said: “My son Sam was born at Birmingham Women's Hospital and they were trialling the Pulse Ox test at that time.

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The Children’s Heart Federation is campaigning for all maternity units to offer the Pulse Oximetry test and is currently asking supporters to raise the issue with their Member of Parliament and sign a Government petition online. Amongst the parents calling for the change is Alex Smith, mother of Georgina Smith who was born with a heart condition.


Georgina was not offered the Pulse Oximetry test at birth and her condition sadly went undiagnosed for almost two years. Alex Smith says: “Georgina’s condition was missed at the 20 week scan while I was pregnant. After she was born I knew something was wrong. She just wasn’t well. I took her time and time again to see her GP and other medical professionals but they didn’t connect her symptoms with a heart problem, they said things would improve and I should just give it time.

what, was just awful. I’m pushing for the introduction of this test for every newborn baby so other parents do not have to go through what my family has had to experience. It’s such a simple change and a quick test, but it could help so much in giving reassurance to families and in detecting babies heart problems early”. The Pulse Oximetry campaign is gaining support not just from parents but from clinicians too. Dr Andrew Ewer, from the University of Birmingham, who has conducted extensive research into the test says: “There is no doubt that Pulse Ox will identify babies with life-threatening, critical heart defects that would otherwise be missed by existing screening methods such as ultrasound and examination. The test is not perfect; our research shows it will detect about 75% of the critical defects, however when used in addition to other screening methods, between 85-95% will be detected before the babies become seriously unwell.

“It was so stressful having a sick child and not being told what was wrong, as a mum all you want to do is make sure your child is well. Knowing there is something wrong, with her but not knowing for almost two years

Sadly, babies in the UK still die from undiagnosed defects and this test will help identify them sooner giving them the best chance for life-saving surgery. Pulse Oximetry is gaining increasing support among doctors caring for babies with around 1 in 5 hospitals now already offering the test. To support the Children’s Heart Federation’s Campaign, please visit www.chfed.org.uk

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R U O Y ! Y A S

Angela Nichols Wells “Yes a Pulse Oximetry test would have picked up the condition immediately as sats were 64%. Luckily my child’s CHD was picked up on the discharge check from hospital after I had had her. I cannot think what might have happened if it hadn’t been.”

Lisa-Marie Butler “Callum was diagnosed at 12hrs old when the extra valve closed off. He went navy blue and, while he was in special care, his sats were around 30%! So maybe it would have helped him a bit earlier! ••••••••••••••••

Kelvin Aveling “Pulse Ox is a must for every new baby. Our baby was born with TGA, which was not diagnosed until 30 hours after birth. It costs nothing and takes seconds.” ••••••••••••••••

Catherine Henley-Thornley: “Let’s get these tests on all babies at birth.”

Kat Sparkes “After many trips to hospital my little boy was finally diagnosed at 15 weeks in severe heart failure. Things took a turn for worse and he ended up in PICU. I believe, with this test, a lot of his trauma might have been avoided.”  ••••••••••••••••

Julie Mcquade - TGV & VSD mum. “In massive favour of such a straight forward CHEAP test! As a nurse it’s part of routine observation in adults and takes minimal training/expense. This should long have been standard practice”.


HeartLine Association 32 Little Heath London, SE7 8HU www.heartline.org.uk Telephone: 033 00 22 44 66 Email: admin@heartline.org.uk Facebook: www.facebook.com/heartlineuk / www.twitter.com/heartlineuk Registered charity number: 295803

Profile for Heartline Families

HeartLine Spring Summer Review 2013  

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HeartLine Spring Summer Review 2013  

HeartLine Spring/Summer Review 2013

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