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Annual Report 2010-2011

HeartLine Review Autumn 2012

Projects and Activities

HeartLine Association


From the Editor... This magazine includes stories from members. These are not just accounts of the hard times that come inevitably to families with children with heart conditions. They provide light on those dark areas we thought were just our own experiences, they offer a survival kit to those in the hardest circumstances. All three children – James, Matty, Theo – were not diagnosed at birth (or before – common nowadays where a defect may be spotted on a scan). The hope of a better future shines from each of these accounts – the love and joy James gave his parents in his short life continues, Matty’s parents seeing the hope of a normal life for their son, and Theo’s mother taking up the responsibility for home educating a child with ongoing health problems. You will find the report from HeartLine on page 9. Although we have raised much less money over the past two years we have spent much less, and what has been spent has been on improving benefits for our members. This means that a few volunteers have been doing a mountain of work for free, and a number of fundraisers have helped us enormously - on behalf of the membership we cannot thank them enough. Hazel Greig-Midlane

Contents James’ story ............................................................................................................................ Fundraising ............................................................................................................................. Ways to raise money Gratitude for Support How your gifts are used Theo and Home Education ..................................................................................................... HeartLine Review..................................................................................................................... Annual Report 2010-2011 What we achieved Into the future Matty - the late diagnosis ........................................................................................................ Publications and News ............................................................................................................ Members Only .......................................................................................................................... Heart Children Book PGL Adventure Holidays Caravan Holidays HeartLine Summer Party Wetsuits Medic Alert Hannah doesn’t need HeartLine Beyond our Membership ......................................................................................................... Problems ................................................................................................................................. HeartLine Support .................................................................................................................. Research into children’s treatments ........................................................................................ Liam’s tests ............................................................................................................................. PGL Short Breaks form ........................................................................................................... HeartLine Membership form ...................................................................................................

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Jamesʼ Story... Martin and I were over moon that our opportunity to be parents had finally arrived At 37 weeks I had a routine appointment with my midwife, who picked up fetal desaturations and arranged for me to go straight to the hospital for monitoring. I picked Martin up on the way and then a few hours later I had had an emergency c-section. The first sight of our amazing little boy was as he hovered over the surgery screen so close to my face I could hardly focus, his tiny eyes opened and fixed on us as to say ‘hello mum and dad‘! Scalded skin syndrome? Baby James was tiny: he weighed 2.2kg. For the first day all seemed well, but on day two a red rash from his cheeks spread all over his body. His skin become sore, blistered and broken in places just as if he had been burnt. The doctors suspected the cause to be scalded skin syndrome but the virus that cause it was never found. James was treated symptomatically with heat for his low temperature, ointments for his skin and antibiotics for possible infections. As his overall condition deteriorated he was moved to special care. We could only pray that whatever was causing his skin to do this would improve, in time thankfully it did.. Before the discharge Martin asked if James’ heart was OK because of the earlier desaturations leading to his prompt arrival. We were reassured his heart was fine. The peace and tranquility away from the wards and beeping monitors was bliss - it was such a joy to have our precious son home. James’ skin was healing and the following week was probably the nearest to ‘normal’ that we ever had. At the end of the week we had a phone call to say that the newborn blood spot test had screened positive for congenital hypothyroidism and that James needed to start on replacement thyroxin. Without this he would not develop normally. It was horrible news but we were keen to start the medicine and monitoring because the condition can be managed.

James was now hysterical after or during feeds, it was painful that whatever we tried it made no difference, after every episode he would be exhausted, choking and sick. I would explain all of my paranoid concerns to paediatricians. Reflux and possible lactose intolerance were diagnosed, James started on reflux medicine and special nutritional formulas to try and help. Something bigger going on Initally the reflux medicines seemed to work but only for a few weeks. It was heartbreaking and scary to see him struggle so much, I felt useless, why couldn’t I feed my baby? At three months old I put him down to sleep in his basket, after about an hour he woke and shrieked, as I picked him up he had a reflux and choking episode so badly this time he could not breath. I yelled for Martin to help, for a few seconds James lay limp in my arms and then finally he gasped for air , taking very shallow breaths. We rang the children’s ward and told them what had happened and that we were coming straight in. James was monitored for the next two days, an obvious pattern emerged that he would feed very little, become extremely upset and his lips would start to turn blue, at which point the nurse would provide oxygen. Treatment was again symptomatic and for the first time I felt something bigger was going on we did not yet know about.

Feeding concerns and weight loss Continuing at home James would often be very lethargic and although he was keen to feed after a small amount he would cry and become very unsettled, often sick. At four weeks old he was admitted to the children’s ward due to the feeding concerns and further weight loss, he was started on oxygen therapy because his saturations had dropped. The consultants suspected bronchiolitis, and a routine ECG and found a small hole in James’ heart. He explained that quite often they close up by themselves. To review the hole an appointment was booked at a paediatric cardiology hospital in four months. We never made the follow up cardiology appointment: it was a month too late… After returning back home James condition slowly started to decline, but we had no idea what was happening or what we were up against. So many little things happened and I would be thinking is this normal? As a first time mum I felt maybe I was starting to be paranoid.

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That evening the consultant had decided to wake James for an x-ray from his sleep, which then resulted in another crying and blue episode, followed by a respiratory arrest. The nurse and crash team were so efficient and possibly saved his life that moment. We had a meeting with the consultant that evening, we wanted to know the plan now. He said James would continue to be monitored, I was alarmed, I did not want to hear ‘monitored’ I wanted to hear ‘transferred to a specialist children’s hospital‘. It seemed obvious that the same thing would continue to happen and without disrespect a general children’s ward without HDU or intensive care was not the correct place. Emotional and furious I demanded a second opinion About an hour later he returned saying that a bed was available at Oxford Children’s hospital and when it could be arranged James would be transferred. Keeping our tiny boy alive Very kindly the adult intensive care team monitored James over evening and into the next day until a safe transfer could be arranged. Martin and I sat by James’ side as he slept, not knowing if he the next time he woke up and cried he would survive. James woke up several times, cried, went blue and required bagging. It was the most horrible experience over and over again-we felt so helpless. The transfer was finally arranged after lunch the following day., Tthe next time James woke and turned blue a large team started to work on intubation, this was the only way he could be transferred in such a poorly condition. We were asked to leave while they worked, it was not long before a nurse returned to explain things are not going well and we should return to see James, did we want anyone else to be with us?. Was this really happening?… I had only been struggling to feed my baby with reflux, how had it escalated to this?. They hardly had space for us in the room, full with so many medical staff working to keep our tiny boy alive. James was covered in IV cannulas and equipment, we could only touch the skin on his little feet. I do not really know what happened and never asked for the detail, but after we had told him how much we love him, cried, screamed and prayed, he still had signs of life showing on the equipment and the intubation had been completed. What we were up against Early evening we arrived at The John Radcliffe and made our way to paediatric intensive care to be reunited with James. After everything we had already seen the sight of James in PIC was still shocking, the equipment and drugs overwhelming, but day after day we became more familiar with the situation and felt grateful that he had the survived to this point. After three weeks of unknown the staff had removed intubation and James was breathing by himself. A few days later moved to the cardiac ward. At four months old we finally had the answer, a relief but also very scary. It was his heart, much worse than the small hole that had already been identified, he also had heart disease, Restrictive Cardiomyopathy which meant his heart was weak and inefficient in the way it would fill and squeeze. The condition had no cure or operation to offer a fix, it could only be monitored and managed with medicines. Although the prognosis was poor we now knew what we were up against and knew what we had to fight. Returning home was wonderful and amazing, but also

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nerve wracking because I knew about the heart condition and as nothing could be fixed we lived in fear of the next episodeWe therefore did all we could never to let James cry for very long. Fortunately for some time James stayed stable. We had reviews every two to three months with his cardiologist, who monitored, managed, investigated possible options and palliative care to help his heart. Finding HeartLine Feeding and severe reflux continued to be a huge problem. By 5 months we had moved to seventeen hours of nasogastric feeding, a slow drip feed into James tummy through the NG tube to try to minimise the reflux. I disliked the NG feeding but it was now the only way, the worst part was trying to stop James from pulling the tube out because that then meant it had to be re passed which James hated and I hated (I was therefore constantly sticking extra tape on his face so he had no gaps to pull the tube!). At the point when I was really struggling to cope with the tube and reflux, JR I picked up a leaflet for HeartLine at the hospital. Not particularly expecting much of a response I posted on the HeartLine online forum under ‘feeding problems‘. It was a release to let things out… how I was feeling, how I hated the discomfort James went through with the reflux, the struggle for weight gain, the battle to keep the tube in place, the wonder of whether my child would ever eat and learn to appreciate the smell and taste of food (such a simple thing after all). Within a day I had so many responses from HeartLine members who had been or who still are in our situation and those who just wanted to offer support. The virtual support group on the forum is amazing, the moderators and heart parents who take time to hold out a hand, generously sharing real experience and tips are fantastic. The replies gave me hope that one day we might beat the oral and reflux mountain, but until that time I knew I had found a support group who really understood. I posted many times about various subjects and always found someone willing to help me retain my sanity! Pericardial effusion and transplant review Any anaesthetic was extremely high risk because of James’ Cardiomyopathy. This was the reason we had seriously considered but always decided not to take the risk operation to replace his NG with a Gastrostomy feeding. Then just before his second Christmas it was discovered that he had a high level of pericardial effusion and an operation to drain the fluid away from the heart and make a small hole in the pericardium wall had to be go ahead as soon as possible. With this situation we did not have a choice the operation had to go ahead to avoid heart failure. Fortunately the high risk paid off in our favour, the operation went well and ensured we all spent a second Christmas together. In fact post operation James bounced back quickly and seemed so well over the next few months. In contrast to his oxygen saturations slowly started to decrease. Our cardiologist arranged for James to be reviewed for extra opinions and possible transplant consideration. At the appointment his heart condition was reviewed and considered fairly stable but we were advised with


Restrictive Cardiomyopathy we should at some point expect deterioration. Heart transplant at that time would be the only option but due to the limited availability of organs and the high demand for them James would not be considered to meet the eligible criteria, i.e. because he had other challenges that would make the operation less successful or post operation a lower survival rate. We will never forget that day and what we were told. James had innocently really enjoyed the day in London, so excited seeing red buses and travelling on the train, whilst his mum and dad were devastated with the news received. This was another low in our life that I again turned to the HeartLine forum, and as usual my need for help was returned with floods of support. Holiday! At two years old James ‘oxygen saturations now ranged between 60 to 70%, therefore for his palliative care he was moved onto twenty four hour oxygen. I really wanted to make a trip to Disneyland Paris, but trying to arrange travel with oxygen was so complicated and we felt we could not reliably organise the trip with the supplies we needed. We still travelled across the sea to holiday, but across the Solent to the Isle of Wight! The oxygen suppliers had arranged for the canisters and concentrator to be delivered and waiting for us at the holiday bungalow, together with another delivery of several boxes of plastics and feed from the nutrition company. Everything went to plan and we have such lovely memories of that holiday, James enjoyed it so much. He was particularly in his element on the ferry, the steam train, and beside the seaside.

something really was not right and made the familiar trip back to the children’s ward. Concerned about heart failure, James was instead diagnosed with ascites, a large collection of fluid around his abdomen in the peritoneal cavity. The treatment was to increase the diuretics he was already taking and monitor the fluid gain. After a few days the oedema had decreased slightly. James was back to his cheeky self and we were discharged home with scheduled reviews. We had a lovely week at home which included a special day out for Fathers Day at the local heritage steam line, where James and Dad were both delighted to meet the real Thomas the Tank Engine. A day for play Then came June 24th, a lovely sunny day. Strangely a day that James had a longer than normal attention span to play, which we did - in fact we almost went through all the toys together. After Martin came home from work they too spent some quality time together and went for a walk around our local lake. That evening the same as any other I put James down to sleep and sat in the dark watching him whilst his feed continued to run. Just after 11pm he woke suddenly and shrieked the most horrible scream, I immediately picked him up in my arms, James slowly gasped, I knew then that that was it, he then stopped breathing. Martin had already come running after hearing James and called 999, I will not go into any further detail because we try our best not to remember the next couple of hours that followed. Two years on It’s just over two years now. Many people told us that that is the milestone from when things start to get easier. I would not say things are easier for us, we miss our little boy every second of every day, after all he should still be with us growing up and reaching milestones, starting school this year. I would say however we have become more used to the situation, we had to learn to live and continue our lives despite what has happened. We still cry but we can also smile again and cherish his memory. I like to organise something nice, something James would have enjoyed to do on the very hard occasions like his birthday, mothers/fathers day, June 24th etc. We have a memory book to write about all the times we shared together and all the little things James liked to do- it’s easy how you can accidentally forget special details like that. Immediately after losing James, Martin had extended time off work and we just spent time together. Fortunately we could both talk about our feelings and enjoy talking about James even if we end up crying, I definitely think that has helped us stay strong. We spent two months planning a colourful celebration of James life. It was a reflective and beautiful service that James would have loved.

Since James had started twenty four hour oxygen his weight gain improved and we really thought things had started to look up. But the weight gain was a red herring, because rather than growth we started to see oedema, weeks of diarrhoea and finally a swollen stomach. He had been reviewed frequently but we reached a point that, after a home visit from our complex care nurse, we decided

When Martin returned to work, initially I really struggled, having lost James who I spent twenty four hours with. I felt as though I had lost my purpose in life. All the usual things we did together suddenly stopped, my ‘mum status’ had been removed. To refocus and rebuild I took time out. After a few months decided I needed to do something a bit different and launched myself into voluntary work, something that I would feel rewarded for doing. Teaching computer basic classes at AgeUK in our local area and

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standing as a Trustee for HeartLine for the last year has really helped to rebuild my confidence and sense of purpose. An inspirational lady Shelly Bowen, who lost both her sons to Barth syndrome, wrote to me on the subject of our loss ‘I think the hardest thing for a mother is thinking she alone remembers her child. People so often don’t even mention the child after he has died. They don’t want to hurt the mother’s feelings. What they don’t get is the hurt of losing a child never goes away. But it hurts worse when you think of him being forgotten’. We are fortunate to have a small group in our area for bereaved parents and meet with them when we can and talk about our lost children. Again the HeartLine forum offers instant support for the low days, at Christmas and the special event dates it’s a place to reflect and other members also offer remembrance and support. Most wonderful two years and three months Our story may sound quite sad, the ending certainly is, but I do want to stress that outside of all the challenges and hospital visits we shared the most wonderful two years and three months together. We had and accepted tremendous support from family, friends and new heart friends. James was so happy and innocent, we made the most of every second, had so much fun, enjoyed weekends and holidays away and were very lucky in that respect. James was our precious son, our little star, he stayed with us for as long as he could and developed the character we loved so dearly. He gave us the strength we have to continue without him. We know and feel in our hearts he lives on.

Terms used: Foetal desaturations: reduction in the amount of oxygen reaching the unborn baby’s blood. Congenital hypothyroidism: lack of thyroid hormone – this is tested for in all babbies at birth ECG: electrocardiogram, records the electrical activities of the heart Echocardiogram (echo): an ultrasound scan to look at the structures of the heart, Reflux: stomach contents escape back towards the throat lactose intolerance: cannot absorb lactose, found in milk

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HDU: High Dependency Unit, more intensive care than a ward, less than an intensive care unit IV cannulas: tubes put into the veins for intravenous (IV) access for taking blood or giving drugs PIC: paediatric intensive care Pericardial effusion: a collection of clued around the heart Gastrostomy: a hole made through the abdomen wall so that a child can be fed straight into the stomach Barth syndrome: a rare genetic disorder causing heart failure, muscle weakness and problems of the immune system


Fundraising Your support could provide children with wetsuits, to encourage nervous parents to involve their child in sport from an early age; or your donations could help towards providing caravan and adventure holidays, or the gift of parent-to-parent contact through publications and website Forums. Nearly all HeartLine work is being carried out through volunteers, so funds are now spent directly on the needs of our families, not on staff. We have made more of an effort to help with events this year, providing HeartLine Hugs Hoodie bears, posters, balloons, badges, bugs, bags, banners and leaflets.

Ways to raise money Look out for fundraising opportunities: • Ask Schools and employers to nominate HeartLine • Get sponsored for staying silent, running, cycling, jumping, absailing, climbing - or sponsor someone else

as their Charity for the Year, or to receive funds from choir or play performances.

• See HeartLine pages on virginmoneygiving.com or justgiving.com, or get sponsorship forms from HeartLine

• Run a Raffle, organise a gig or stall, collect in a local pub: ask for HeartLine posters and leaflets, banners, balloons and bears— HeartLine’s own huggable hoodies

• Make a donation direct—use the button at www.heartline.org.uk—or send a cheque

• Or buy a HeartLine Hoodie for £10

• Pay directly into the HeartLine bank account:

Sort code 30-91-53 A/c 03671845 • Ask your employer if you can use Give As You Earn scheme –a donation every month • Join the 100 Club—£2

a month with a chance to win the monthly draw. Emily ran the London Marathon for HeartLine

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Gratitude for support Unfortunately we cannot thank all donors individually in this public space (some have declined to be thanked) but a huge thank you is extended to the companies who made us their charity of the year, the schools who held special days, the many who jumped onto their bikes, and out of planes, sold cakes, organised parties and went without their Christmas presents in order to support HeartLine. We wouldn’t survive without you – every pound has been spent on families whose lives are improved by just knowing there are people out there who care about them

Donations of £3000 and over have been made by Basepoint Business Centre Camberley British Airways Cabin Crew Entertainment Society, The Springs Golf Club Committee Mrs.Gay Gwendolin legacy Theo Walker fund Emilly Bowen – who took HeartLine’s Silver Bond for the London Marathon Enjoying the BACCES panto

Other donations A&S Lass Charities Ltd A D Power Will trust Brimover Trust Gill Burgess in lieu of birthday presents to her husband Goldman Sachs who contributed in kind to the Summer Party Hospital Saturday Fund Hunting Charitable Trust Isabella Blues Band Line Dancing night at High Green Club Michael Shanley Charitable Trust

And the many more who were good enough to send small donations, sometimes at a time of sadness in remembrance of loved ones The generous gifts of time by friends who have spent many hours are worth a great deal to us – thank you especially to Kerry M-S, Val, Kevin, Sheila, and Louise And we have to thank printers and suppliers for their help: Ridgeway Press, Darwin Press, Two Bare Feet, Bison Grid

Mrs Deabill’s husband Mrs Walsh Newlands Girls School Parish Church St Lawrence Eastcote Paul Carter Staff of Plasnewydd Primary School Sellafield Ltd Sobell Foundation Stanstead Abbotts Lodge The Goldsmiths’ Company The Naish Family Wycombe Abbey School Chapel Collection. Yorkshire Water and Partners ADU

   

               

  

       

                               

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How your gifts are used HeartLine provides practical help and support to families Help us: • Promote services to new families, perhaps those who are expecting a baby with a heart condition, or have child recently diagnosed and awaiting surgery ʻI donʼt know what I would have done without HeartLineʼs help in those first few monthsʼ • Publish and distribute Heart Children – a practical handbook for parents free to members • Provide wetsuits for children who feel the cold because of poor circulation – to encourage confidence and widen horizons ʻNow Charlie can go swimming with his twin William…thank you so much!ʼ

• Remember children lost to heart conditions in the Heart of Stars • Print and distribute books for children to help take their fear of tests and procedures away ʻThis booklet really helped – she was so terrified of echo scans beforeʼ • Send groups of children on PGL short activity breaks – one group of heart children and one group of brothers and sister ʻA brilliant experience … heʼs now full of confidence and I think grew two inches in the four daysʼ • Subsidise family holidays in HeartLine’s caravans – in Parks in Mablethorpe in the north and the New Forest in the south • Run parties to bring families together and to give children fun!

Theo and Home Education Willow explains the background to her decision to home educate

My son Theo presented with acute severe heart failure at one week of age. At first his symptoms were thought to be caused by a coarctation of the aorta but this was swiftly ruled out with an echo. Nothing specific Perplexed, the doctors performed test after test on my newborn baby, questioning me deeply about the days prior to his admission. The picture was thus.. From day one we thought we had a quiet baby. Days two to four he fed poorly and sleepily, made little grunting noises when breathing and had cold hands and feet. Days five to seven he became gradually worse. Nothing specific. As I had other babies I knew he was unwell somehow. Little did I know! Overall diagnosis Eventually, about two days after his emergency admission to cardiac intensive care, the aetiology of his symptoms suggested viral myocarditis, especially as I had had a mild gastric illness a few days before he was born. Subsequent testing showed an enterovirus RNA in his spinal fluid. During this time he had meningoencephalitis and seizures. He required a stent to be placed into his heart to allow high pressured blood to flow back around, to relieve right sided heart failure. His overall diagnosis now is dilated cardiomyopathy - such a simple sounding term for what is a death sentence, all caused by a virus. Home and admissions He spent three months in cardiac intensive care, suffering liver failure, chylothorax requiring tpn and octreotide therapy and multiple chest drains, a tracheostomy for long term

ventilation, ng feeding. He then moved onto a high dependency unit for a further six months. When he came home at nine months old he was ventilated twenty four hours via tracheostomy and fully dependent on tube feeding. Since his initial discharge we have had countless readmissions for pneumonia, liver failure, renal failure requiring dialysis, further cardiac demise and even medicine increases. Gastroenteritis poses a huge threat because he is dependent on diuretics, yet equally has a limited amount of fluid that his body can handle. Treatment and therapies He is on around twenty doses of cardiac medicine daily. He requires endless antibiotic treatments. He now has a gastrostomy and due to the multiple catheterisations and iv cannulas and other reasons for accessing his veins, he has had a portacath fitted (permanent central line). The large amount of trauma and chemicals his body has dealt with have led to episodes of colitis, where he has massive gastrointestinal bleeds. He has received physiotherapy, occupational therapy, speech therapy, feeding therapy. He received weekly visits from the educational Early Years Team.

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and 8, 9 and 10pm) and even more so when there are additional antibiotics four times a day that can't be given with milk etc - very complex when you're on a daily amount to be given through the pump. I know that after Theo’s two hours of activity, he is no good for much more than watching endless CBeebies or sleeping, and to push him to do more will result in increased heart failure symptoms, maybe not immediately, but the day after and maybe after that.

He is under the care of both Leicester and Great Ormond Street hospitals, mainly due to the high likelihood of him needing a heart transplant at some point. He has even had a stem cell transplant, a trial run at Great Ormond Street. Ironically we were once told that he did not meet the criteria for our local social services to provide assistance from the disabled children’s team. A few sharp phone calls from our hospice support worker solved that. How he is My little boy manages to play for about two hours every day. He is still in nappies and virtually incontinent. He has delayed speech thanks to the tracheostomy. He does not eat without vomiting. He vomits so frequently in fact, that his tongue and teeth are appalling: tongue ulcerated and the enamel poor. Trying to brush his teeth induces more vomiting. Try to persuade him to eat and he nibbles, only to vomit more. His lack of speech and delayed social skills mean he gets extraordinarily frustrated and lashes out at people. School? Possible difficulties …. Theo was due to start school this September, had he joined with his age cohort. Last autumn I arranged a meeting with the SENCO from our catchment school and a few other choice professionals associated with his care and we discussed the possible difficulties of Theo being in mainstream school. Although the educational psychologist and SENCO and early support teachers assured me that his many medications would be managed appropriately, his toilet issues, his vomiting etc, all of it would not be a problem, I simply did not believe it to be true. … and complexities I know how complicated it is when another of his medication doses change three times in a fortnight due to increments and optimisations. I know how frustrating it is to have to store some bottles in the fridge and some in the cupboard and still remember to give them, especially when they are all spaced an hour apart (7, 8 and 9am, 1 and 2pm

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Not cope I knew that he was already going to be 'behind' his peers in school and that no amount of one-to-one support would actually make up for an abrupt three week absence while he deals with another hospitalisation for pneumonia. I also knew in my heart that a child who needs to sleep from 6pm until 9 am and still needs a nap in the day, would not cope with school routine and the mayhem of school mornings! Decision So I have turned to home educating - certainly not a light hearted decision but it was simple. If we were sufficiently affluent, I think I would turn to a private establishment, where flexibility and care could be bought.

Terms used Coarctation of the Aorta: narrowing in the aorta - the artery taking blood from the heart to the body Heart failure: the heart is not keeping up with the demands of the organs of the body ECHO: short for echocardiogram: an ultrasound scan Aetiology: the study of causes Viral myocarditis: inflammatory disease of the heart muscle caused by a virus Gastric illness: upset stomach Enterovirus RNA: a virus which at first resproduces in the stomach Meningoencephalitis: inflammation of the brain and surrounding tissues Stent: a tube which creates or maintains a passage for blood Dilated Cardiomyopathy: the heart muscle is thin and baggy and pumps poorly Chylothorax– fatty h fluid escapes from the lymph glands into the space around the lungs. TPN – total parenteral nutrition – all nutrition the body wants is fed into a vein. Octreotide therapy: for diarrhoea[?] Tracheostomy: a hole in the windpipe to help breathing NG feeding: fed by nasogastic tube: a tube through the nose into the stomach High Dependency Unit (HDU): more care than a ward, but less than the intensive care unit Renal failure requiring dialysis, kidney failure means blood has to be cleaned using dialysis Gastroenteritis: upset stomach and intestine Diuretics: medicines which reduce the amount of fluid in the body. Gastrostomy: a hole directly into th stomach Catheterisation: tube fed into the veins to test for eg pressures, or treat eg narrowing IV cannula: a tube inserted into the vein and left while it is needed for access for drugs or to take blood. Portacath a permanent central line. Colitis: inflammation of the large intestine


HeartLine Review Our aims The aims of HeartLine Association are to help and support children with heart disorders and their families. In furtherance of these aims HeartLine has adopted these objectives: • To identify and support heart children and their families • To promote and develop an understanding of the families needs through information and discussion • To co-operate with other voluntary organisations The HeartLine Office was closed six weeks prior to the start of the 2010-11 year, and the administrative and executive functions were taken over by the Trustees. This was inevitably a time of considerable pressure to scope the work, protect members’ benefits, test policies and consolidate new working practices.

Annual Report 2010 - 2011 1 November 2010- 31 October 2011 At the AGM on 28 May 2011, Sarah Sparkes was elected as Chair; Hazel Greig-Midlane, Vice Chair; Darren Pickard, Treasurer; and Louise Brazier, Trustee. Clare Burgess, Kevin Ford, , Annette Jackson, Wendy Lynch, Helen Woods stood down from the Board of Trustees, Linda Hardy and Caroline Mutton having had to stand down earlier in the year. Sarah Sparkes, the Chair was forced to stand down due to family circumstances in July 2011 and Hazel Greig-Midlane took over as Acting Chair Trustees serving at the time of the approval of the 2010-11 Annual Report were: Hazel Greig-Midlane, Chair; Darren Pickard, Treasurer; Louise Brazier; Guido Barbato; Sofia Kelesidou; and Francis Johnstone. The Trustees gratefully acknowledge the help of volunteers, in particular the online forum administrator and moderators who protect this resource seven days a week, the volunteers who organised the caravan bookings, the parents who accompanied children on the PGL activity breaks, and the parent who deals with the majority of emails that come to the Office.

Last year we reported that HeartLine had managed to survive a financial crisis, and to maintain most of our services to families.. Since then we have consolidated our work and looked to strengthen policy to support us through these hard times. Financially we have come out of a yearon-year deficit, but only with dedicated volunteers to pick up the mounting work. Our membership has passed 2000 families. We have expanded some member benefits – they can now receive the Heart Children book free of charge, a substantial reduction should their child need a Medic Alert, and a free wetsuit to encourage swimming or just splashing! Places on activity breaks at PGL are free to 24 children, and the season at our two caravans has been extended for subsidised holidays. Parent to parent support to families continues to be mainly through the website forum, and we have been able to extend our presence in social media. We hope to extend to local support in the coming year, as this is what so many of our new members are looking for. A decision was taken to maximise benefits to our members with increased resources available to us now that running costs have been minimised. We are particularly grateful to those who have fundraised – there have been many kindnesses and we have acknowledged those that have come via the office.

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What we achieved Despite a substantial drop in funding and little administrative input we have fulfilled our objectives in supporting families: • Ran the summer party at Wetlands Wildfowl Trust • Ran two activity breaks, one for children with heart disorders, one for their siblings • Amended and printed Heart Children books • Produced a new comprehensive magazine style HeartLine Review • Published 3 newsletters to members to maintain knowledge and interest in HeartLine activities • Recruited over 100 new members • Distributed 62 wetsuits to encourage children who find it difficult to maintain their body temperature to take to the water • Ran two caravans for the season and set up improved caravan booking systems for the following year • Maintained a valued message board with forums for many of the areas of interest to families

We have now managed to significantly reduce the deficit faced by the charity. We ended the year with a £(6)k deficit versus an average £(39)k deficit across the prior two years. Projected income for 2012 is expected to be positive at year end. Our General Fund balance of £29,486 as at 31 October 2011 enabled us to maintain our support services to families and extend them where necessary, offer subsidised caravan holidays, and activity holiday breaks for children, produce regular newsletters and update other publications.

Cash flow summary year ended 31 October 2011 Receipts

£

Donations

26,251

Activities

10,241

Investment Income Total income Payments Fundraising activities Direct expenditure Governance

2 36,494 £ 4,760 29,002 8,561

Total expenditure

42,323

General fund balance

29,486

Into the future What does the future hold for HeartLine?

We want to continue the same level of support we have managed in the last year, but we will need more help in the form of experienced heart parents who lend their knowledge and expertise as Trustees. We are committed to a new edition of the Heart Children book, making full use of the internet to market our services and build on the social media work of the last year – a new website is high on the agenda. We will continue to provide free material to members, subsidised caravan holidays, free activity breaks for heart children and brothers and sisters.

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We will ensure that we respond to telephone calls and emails, and that there will be an internet forum. Wherever possible we will put members in touch with others who have had similar experiences and who can help out. Because of the ever-rising cost of postage and our rising number of members (2090 families at the last count!) we will be sending out most of our newsletters by email, but with at least one annual post-out for the foreseeable future.


Matty - the late diagnosis Wake him Matty was born a healthy 8lb 7oz on 8 April 2009, and as he was my second child with no complications we were only at the hospital for less than four hours from start to finish. When he was about six months old, I recall putting my head to his chest and telling my husband that I could hear Matty’s heart and it still sounded like it had when he was in the womb with the ‘Whoop whoop’ noise and wondering at what age it would sound like a normal heart beat. He had sailed through all his checks where his heart had been listened to and so I thought this was just something that was normal for babies. ʻWhat murmur?ʼ Matty started to toddle in June 2010, and moved to running by September. From mid September onwards he seemed to have a cough which wouldn’t shift we just thought it was colds. He made himself sick a couple of times after running around and then coughing so much. My Mum took him to the doctors in November while I was at work just to get the cough checked out. A doctor listened to his chest and gave him antibiotics for a chest/ respiratory tract infection. Two weeks later, the cough didn’t seem to have gone away so I took him back to the GP, still thinking nothing of it and expecting him to be diagnosed with a viral cough. This time we saw a different doctor who listened intently to Matty’s chest and looked at me a little puzzled before asking ‘What is happening about his heart murmur?’ to which I replied ‘What murmur?’. I still was not concerned as my Mum had been incorrectly told I had a murmur when I was younger so I didn’t think it was particularly serious. We were referred straight to Stafford Hospital Paediatric Assessment Unit where Matty was listened to a bit more, xrayed and had an ECG (but no sats readings despite every other child coming in to the unit having theirs taken). Six hours after we had arrived, the doctor told me he was referring Matty to Birmingham Children’s Hospital for further tests and that he was referring him as urgent – at this point it hit me it was not something that was just a mistake and how serious it could be. He had explained that it could be a small hole making such a loud noise or a narrow valve having the effect of a hose pipe being squeezed. Christmas Eve Six weeks later, which just happened to be Christmas Eve 2010, we were at Birmingham Children’s Hospital Heart Outpatients for the appointment. I had done a bit of Googling, decided that he had not got anything too serious and so was completely thrown when the cardiologist listened to Matty’s chest then did an echo and confirmed that Matty had two holes in his heart and a defective valve. They were shocked that he had never shown signs of heart failure It appears that Matty’s ventricular septal defects had allowed the pressures in his left and right ventricles to equalise, and the pulmonary stenosis made up of a muscle

build up below the valve, a thickened and dysplastic pulmonary valve and narrowing above the valve had prevented too much blood reaching his lungs. We were informed that Matty would need open heart surgery on a heart lung bypass machine – things I thought were for old people, not toddlers. We were told to go away and arrange to take time off work for his operation which was likely to be around Easter time. At this point we were put in touch with a Cardiac Liaison Sister who took us to a relative’s room to absorb what we had just found out. That Christmas was very emotional to say the least and I hid myself away for a couple of weeks to avoid all the happy festive people when I had just had my world turned upside down. HeartLine Over the next few months I felt very lonely and couldn’t find anyone who understood what I was going through, most people would say things like “I don’t know how you cope” which I found infuriating as I didn’t see I had much choice. I found most people liked to simplify it in their minds into a typical ‘hole in the heart’. Towards the end of January I found the courage to join the HeartLine forum and finally found people who had been through what I was going through, who didn’t think any of my questions were silly and who didn’t back away from the less pleasant questions. I quite honestly do not know how I would have coped without the forum - the Cardiologists and CLNs may know their stuff but they did not know or understand anything about living with a child with a heart condition and the worries it presents. I joined HeartLine and received information packs and a wetsuit for Matty - it was the really thoughtful things like this that made a real difference. Grow or get worse? Easter came and went, and Matty still hadn’t had his operation - every new milestone left me upset that we still did not know when his operation would be. It was hoped that he could be operated on in the new hybrid theatre where they would be able to do both a catheter procedure

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on one of his holes and then open heart surgery on the other hole and his pulmonary stenosis. By this time Matty’s breathlessness had got a lot worse and he would get blue lips and tongue – we had been told that he may turn blue, but it was his breathlessness that was our major concern as he was getting out of breath as soon as he exerted himself even slightly. In April he was put on a trial of diuretics to see if they made a difference to his breathlessness. We were told to try them for three weeks, but no longer than four if they did not make a difference. Just as I was starting to lose hope I received a text from my Mum, while I was at work, to say that she had just changed the wettest nappy ever and it had only been on for two hours! And sure enough the breathlessness eased. By the start of July, the breathlessness was back. We saw a different cardiologist who said that Matty’s pulmonary stenosis had worsened and that it was probably time to think about surgery. Then in August we were told that it would still be better for Matty to grow a bit to allow him to have the larger hole closed by catheter. This left me really confused and frustrated as I did not understand what we were waiting for any more – not that I wanted the operation any sooner than necessary, I just wanted to understand what the reasoning was - were we waiting for him to grow or waiting for him to get worse?

Matty was down for the afternoon slot, so couldn’t eat anything from 6.30am. I thought that would be real problem, but Matty coped really well just with a bit of a distraction. He went down at 2pm – I was in pieces as I left him and we didn’t have anywhere to go - we hadn’t got accommodation and had six hours to fill. We pulled ourselves together and walked in to Birmingham City Centre. We hadn’t eaten as we hadn’t wanted to eat in front of Matty, o we were starving and headed to Burger King. At 3pm, just as we were stood in the queue my husband’s phone rang – I was hysterical as he was talking, but it turned out to be one of the Ward 12 nurses confirming we had accommodation at Ronald McDonald House. We ate something before going off to Build-a-Bear to make Matty a special teddy with a voucher my colleagues had given me. We didn’t really want to be so far away from the hospital any more so we headed off to check in to Ronald McDonald House and had a look around. The room was perfect – just what we needed a ‘base’.

The call At the end of September I received a call to say that the surgeons were all in agreement that Matty needed his operation - we could expect him to be operated on in two to four months time. Needless to say I was very confused at this point as to what had changed. We met with Tim Jones, one of the surgeons at Birmingham, who explained that Matty would be operated on in the hybrid theatre, but as he would be having his chest opened they could do a catheter closure of the large VSD from closer to the heart rather than the groin and then would put him on bypass to deal with the rest of the problems. He would expect Matty to have his operation either the end of the year or early 2012. So I was more than a little shocked to get a call the following Thursday to say there was a slot available to perform Matty’s operation on 9 November. I learnt what pacing the room really meant as I called my husband to let him know, then my Mum to arrange for my eldest to stay with her and my employers to let them know I wouldn’t be in next week. I then had a mad panic to get hold of a Trunki suitcase for Matty to take his things in to hospital in – I think it gave me something to focus on! The Op It was a strange, tearful few days until we took Matty into hospital for his pre-op checks. We met the surgeon again the night before and my husband signed the consent forms – which I was really grateful for as I had built that up in my mind and didn’t think I could actually bring myself to put pen to paper.

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Intensive Care - The First Time By 8pm we were still sat in the room at Ronald McDonald House and hadn’t heard anything. I called over to PICU to see if there was any news and was told Matty was back from theatre. We rushed over to see him. Despite seeing all the photographs of what to expect, I was still shocked to see my super fit Matty with so many wires and tubes. It was all a bit of a blur then - I think the surgeon came to see us that night and pointed out that Matty was being externally paced as his own pacing had not recovered during surgery. We were told that the external pacer could be used for up to two weeks, and that out of every 200 children who come out of surgery with an external pacemaker, only one or two would actually have to have a permanent pacemaker fitted. The next day Matty was desperately thirsty but was restricted as to what he could drink so as not to have too much fluid in his body. I don’t think anything prepares you for how awful it makes you feel to deny your child a drink when they have been through so much and are begging you for one. At one point Matty saw his urine drain and begged to drink it, not realising what it was, just seeing it as liquid and dreaming of orange squash.


HDU/ Ward 12 Matty was moved back to the ward on Friday afternoon officially to HDU but as it was the weekend he was allowed out on to the main ward next to the nurses’ station. He had a set back following a blood test which revealed his platelets had dropped to dangerous levels and was confined to his bed due to risk of spontaneous internal bleeding - apparently this was a very rare and unfortunate coincidence which was nothing to do with his operation, but was a condition known as ITP - cause unknown. Matty was given a platelet infusion followed by immunoglobulins to recover his platelet levels. No rugby Now Matty had been externally paced for nine days and his cardiologist, surgeon and Cardiac Liaison Sister all came together to explain that if they did not fit an internal pacemaker on that day then it was likely that it would have to be fitted as an emergency over the weekend. We were given the opportunity to ask questions and discuss the implications, but it didn’t really feel like we had any other option but to consent. We were told that he would not be an arc welder, or play contact sports – bang went our hopes for Matty playing rugby for Leicester Tigers and England! . My main concern was whether this would limit his life –but I was assured it would not. Oh, and of course there was the worry of whether or not he would be able to play his new favourite game ‘Angry Birds’ on my phone – we were told he could so long as he held the phone 15cms away from his pacemaker. My husband signed the consent forms again. Leaving him for surgery again so soon after the first time was awful and I went to pieces just outside the theatre. My husband held me up and walked me back to the ward. We left the hospital to get some fresh air and headed back to the room at Ronald McDonald House.

at 10pm and 1am. When he woke up in the morning he was desperate for a chocolate milkshake so we had to take him back over to the ward quite early on as we didn’t have any milk. That morning we dressed Matty in proper day time clothes for the first time since we had brought him in as he hadn’t seemed well enough to be in anything but pyjamas. Packing When the nurse removed the dressing from his drainage wounds she was concerned by its appearance and called for one of the doctors to come and have a look at it. The doctors were in two minds as to whether to let him go home or keep him in and give him intravenous antibiotics over night, fortunately they saw how desperate we were to go home and they were in need of the bed so they prescribed him some further oral antibiotics and said if there was any change in the appearance to let them know immediately. They arranged for us to go back on the following Monday to see the nurse in outpatients for his drainage stitches to be removed and the general state of it to be assessed as to whether it was healing.

Sinus rhythm At 6pm we got a phone call from the nurse on the ward to say the surgeon wanted to see us but Matty was ok. Of course this sent our hearts pounding and we rushed over from Ronald McDonald House to Ward 12 to see the surgeon. The surgeon told us there was nothing to worry about, but when they had got him in to theatre and opened him up his natural sinus rhythm started to return. They had continued to fit the pacemaker as there was still the concern around the fact that when he did lose his rhythm he did so spectacularly and that was not a risk they wanted to take. We were then allowed to go over to PICU to see him. It was nowhere near as shocking as the first time, but he was still on a ventilator and had had his chest reopened. He very quickly started to come round and the nurses on duty had to extubate him rather quickly as they were concerned he was about to pull the tubes out himself if they didn’t! Moving in the right direction Once the external pacing wires and drainage tubes were out Matty’s nurse arranged for us to take hin over to Ronald McDonald House with us – it was great to get him out of the hospital and away from the nurses and machines. We had to take his meds for the night which we had to give him

Heading for home We then had to wait for the pharmacy to make up his meds – two lots of antibiotics and his diuretics – before the nurse could discharge us. Just as we were discharged we were told it was a good time to be leaving as they thought there

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may be a tummy bug about to break out. We were discharged and heading home by 3pm. My husband went to fetch Matty’s brother from my Mum’s house – when Matty heard his brother’s voice he burst in to tears and we realised how much he had missed his big brother. It was strange but lovely to be home and all of us under the same roof after two and half weeks in hospital. We spent the next three days avidly watching Matty’s drainage wounds to see if they had got any redder and we needed to head back to Birmingham. Luckily the antibiotics worked their magic and the wounds got pinker rather than redder. Matty had started to walk around the house, although reserved the right to ask Mummy to carry him whenever he wanted. He would say ‘Look at me Mummy I’m walking!’ with his arms stretched out in front of him in a sort of swimming motion and his back bent over. It was heartbreaking to watch a two year old walk in just the way my grandmother used to walk when she was ill. He still could not change his position and if he wanted to sit down or stand up I had to help him. Stitches out We took Matty back to Birmingham for his stitches to be removed from his drainage wounds on the Monday. We weren’t sure how he would react at having to go back to hospital. He wasn’t too bad in the waiting room but was not impressed when the nurse started looking at his chest. He made a lot of noise to let us all know he wasn’t very happy about it all, but he stayed very still while she removed his stitches – which was not very nice as there were little bits of plastic dressing stuck in the sore bits of the wound and the knots of the stitches were not very easy to find. He had a further dressing put on his wound to stop it catching on his clothes and from that point he was very wary of anyone wanting to look at his chest – he would cry ‘Don’t look at it! Don’t pull it!’ if he thought someone was going to go near it. Recovery It took Matty until Christmas to get his strength back, by then he was walking straighter and more comfortable with letting people look at his chest. By January, when I returned to work, he was quite happy to flash his chest at anyone who showed the slightest bit of interest in looking at it. I didn’t know how I would feel looking at his scar – I never thought I would say this but I think his scars are beautiful, they show how brave he has been and how special he is. Nearly twelve months later, he has just started school in the nursery unit - he attends five mornings a week and the teachers can’t tell he is any different to any of the other children. He has not been using his pacemaker very much - just 2% of the time since Christmas, so one day that can

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be removed but the actual wires will probably stay as that would be a far more invasive surgery than just removing the pacemaker. He faces further surgery when he is older, hopefully not until his teens, to replace his pulmonary valve which is currently ineffective but apparently a child can cope with that quite well. He still tires a little and goes in the pushchair sometimes, but overall he is a completely different child to this time last year, and having watched him running around a football pitch this morning whilst his brother played I am grateful to the surgeons for giving him this new lease of life.

Terms used Echo: and ultrasound scan of the heart Heart failure: the heart not keeping up with the needs of the body PA banding: a band restricting the pulmonary artery to reduce damaging high pressure blood into the lungs Ventricular Septal Defects: holes between the left and right ventricles Pulmonary Stenosis: a narrowing of the pulmonary valve Hybrid theatre: a theatre where catheter tests and interventions as well as open heart surgery can be carried out Diuretics: medicines for removing fluid from the body so reducing the strain on the heart Catheter closure: using a fine tube through a blood vessel to place a device across a hole to close it Externally paced: heart regulated by pacemaker machine outside of the body Idiopathic thrombocytopenic purpura: (ITP) is the condition of having an abnormally low platelet count Immunoglobulins: psrt of the body’s natural defence system – an immune response PICU: Paediatric Intensive Care Unit Sinus rhythm: The normal regular rhythm of the heart set by the sinoatrial node, the natural pacemaker Extubated: remove the ventilator tube


Publications and News Newsletters 3, 4 and 5 Newsletter 3 headlined the earlier booking for the HeartLine Caravan Holidays – this was successful in raising the number of families who were able to enjoy spending time at Mablethorpe or Oakdene over the year. We were able to offer free wetsuits, and published a (rather confusing – sorry!) size chart, entangling many children in tape measures for a period of time. We carried an obituary for the inspiring David Northeastthe first child to have a Fontan in UK. Father of seven, biker, and for many years a HeartLine volunteer at Great Ormond Street, David died at the age of 51. ‘Now free to HeartLine members!’ – Newsletter 4 carried the news that, thanks to some sterling fundraising the Heart Children book could at last be given to families free of charge. This is so important as ordering and paying for a book often delayed a families access to information so helpful in the early days of dealing with a child with a heart condition. Outside of our membership, there is a charge of £13 for single copies of the book, or £7 for multiple copies. The new recruitment poster and leaflet were advertised in this Newsletter – these have been widely distributed to hospitals and members and our membership is on a steady climb. HeartLine was the charity chosen for support by BACCES (British Airways Cabin Crew Entertainment Society) to benefit from their Panto in their 40th year and a HeartLine family recorded their first ever experience of a pantomime. The Summer of 2012 was celebrated in Newsletter 5, with a record of the Summer Party held at the Lookout in Hyde Park (on the Saturday when it didn’t rain), introduced the HeartLine Teddies, wearing hoodies and bearing the legend ‘HeartLine Hugs’ On 4 July the Joint Committee of Primary Care Trusts took a decision to implement B of the children’s cardiac services reconfiguration options. This option would result in children’s heart surgery no longer being carried out at Brompton, Glenfield, or Leeds. Objections to these changes are being reviewed by the NHS reconfiguration panel and possibly a judicial review. For parents it has been relief for many, and sadness for those facing the changes to their teams. Newsletter 5 reported on the campaigns being undertaken by parents.

While the services are being rebuilt in whatever configuration, HeartLine warned of the danger of excluding parents from information about their child – we have seen a lot of neat diagrams with information pathways and networks centred around the child and neatly avoiding the parent who is likely to be the main administrator of treatment, the collator of appointments, reporter of symptoms, the gatherer of drugs, and source of information to clinicians.

Publications Heart Children —a practical handbook for parents and a useful guide for those caring for children with heart conditions and their families. ‘we were given the Heart children book recently at an appointment, I just wish we'd been given it 18 months ago, when Daniel spent 4.5 months in hospital- would have been really useful for then and when we finally got home, lots of useful info in it’ General leaflet: all about Heartline with a membership application form and a donation form Posters: raise awareness and funds with HeartLine posters Fundraising leaflet: new leaflet to inspire support for our families Dental leaflet – (heart children can be vulnerable to disease which starts in the mouth and infects the valves of the heart) all very well trying to protect your child’s teeth from decay, but how? This leaflet gives the advice you need. Baby Bear, Growly Bill – two little colouring books about a bear is born with a heart condition, and his experience of visits to outpatients Marketing: let us know if you need help with raising awareness or funds and we can send you Bears, balloons, badges, bags, bugs, and banners to help

Growly Bill an d Outpatients Cl the inic

HeartLine Ass ociation is a Registered Charity No. 295 803

Baby Bill HeartLine Ass ociation is a Registered Charity No. 295 803

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Members only Subsidised caravan park holiday, free Heart Children book, wetsuit for your heart child, activity breaks for older heart children and for brothers and sisters, and an invite to the summer party, help with Medic Alert bracelet cost – we can

provide these to HeartLine Association members. Not a member? There is a form on page 24, or complete the form on the HeartLine website.

Heart Children book – understanding the heart,

kitchens, bathrooms and children’s bedrooms by parents struggling with children who won’t eat, sleep, or take their medicine, explaining where to get help or at the least empathy. For a member’s free copy call 03300224466 or email admin@heartline.org.uk

prenatal diagnosis, diagnostic tests, the most common heart defects and arrhythmias, feeding, medicines, catheter procedures, open heart surgery, devices, communicating, consenting, concerns and complaints, second opinion, and much of the practical knowledge developed in the

PGL Adventure Holidays – for children 9-17 years, a Friday to Monday activity break, for children with heart conditions and separately for their brothers and sisters. There is an application form on page 23 to complete and return.

'the brothers and sisters'

Caravan Holidays 2013

HeartLine caravan holidays

HeartLine has two static caravans – one at Mablethorpe at Golden Sands in Lincolnshire, and the other at Oakdene in the New Forest.

Time to think about next year’s holidays, and if you’ve got your eye on one of our caravans, as a HeartLine member you can book now. Priority will be given to families who haven’t used the caravans before.

We are holding the prices at the same rate as last year For the Low Season Mablethorpe is £131 a week (£32 per night) and Oakdene is £158 a week (£37 per night) Low Season weeks during 2013 are: • 23 - 29 March • 13 April - 24 May • 1 June - 19July • 31 August - 1 November For the High Season: Mablethorpe is £336 a week and Oakdene is £352 a week High Season weeks during 2013 are: • 30 March – 12 April 2013 (Easter) • 25 - 31 May (Half Term) • 20 July - 30 August (Summer Holidays)

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To arrange a booking, please contact Sheila on 01189 619965 or by email to thepickardfamily@hotmail.com with Caravan Booking as the title. Sheila will discuss the deposit and payment terms and arrange for keys to be released. Find out more about the caravan parks: Mablethorpe Golden Sands at: www.haven.com/parks/lincolnshire/g olden-sands Oakdene at: www.shorefield.co.uk/OurParks/Oakdene-Forest-Park


Members only HeartLine Summer Party The summer party 2012 this year was a fun packed day held at the educational centre in Hyde Park called the Lookout. The event was again funded and supported by an energetic team of Goldman Sachs volunteers, it was also a pleasure working with the Lookout staff who tailored the day exactly for our needs. Despite weeks of rain we were lucky to have a dry day and even a spot of sunshine in the afternoon. We had various creative crafts and indoor games for the children and the venue had a beautiful outside garden for all to enjoy. The lookout team ran sessions for pond dipping and bug hunting that proved very popular with everyone. As usual we ended the event with the HeartLine outside games, egg and spoon, sack racing and the tug of war (which to the boys’ disappointment was won by the girls!). We hope all our families had a day to remember and the chance to meet other HeartLine families.

Inspecting the bugs!

The date for the next summer party will be advertised on the website and emailed out to members in the Spring 2013

Indoors at the Lookout

Sack races in Hyde Park

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Members only Wetsuits... ‘I just wanted to say a BIG thank you from us and especially from our daughter Phoebe (age 6) who was able to `surf the waves' with her big sister when we went on our holiday to Dorset thanks to the wetsuit donated by Heartline. It made the world of difference to her as before she has fought shy of even going in the sea due to the cold! Keep up the great work you do for all families across the UK - it's a comfort to know you are there.’ We are very pleased to be able to offer HeartLine members free wetsuits for their children with heart conditions, and over 60 have been sent out in the last year We know they make a big difference to children who get blue and freezy in the warmest of pools. Call HeartLine on 033 00 22 44 66 or email admin@heartline.org.uk We hope that wetsuits will be available again from Spring 2013 – details will be on the website and sent to members.

Medic Alert If your child needs a Medic Alert – perhaps at the start of a school career to alert others to their medication or heart condition – call HeartLine to get a £19.95 reduction on the cost of their first bracelet

Hannah doesnʼt need HeartLine There often comes a time when families decide to leave HeartLine – we are always delighted to get a farewell account of how well things are going now – and this short email from 19 year old Hannah was a huge pleasure to read: I have dilated Cardiomyopathy and have had it since birth. Throughout my life I have had to have yearly checkups, but they have become more relaxed year by year and I have never felt the effect of my condition. I got an A at GCSE PE and am currently at Loughborough University playing sport and going for runs like every other student. I went travelling last year and I did a 12000 ft Skydive in New Zealand s well as a Scuba Dive on the Great Barrier Reef in Australia which were both amazing! Live life to the full and don’t let

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having a hear condition stop you from doing anything that you want to do. Hannah does not want to be known as the person with a heart condition, but she is happy for us to mention her infant feeding problems – her mother writes: She was a terrible feeder as a baby ad pre school – vomiting every meal and had to have high energy drinks plus duocal and double cream in her tiny meals. Now she has a good appetite and really enjoys her and is normal size and weight. In fact she’s very healthy and fitter than most of her age. Great to have known you Hannah!


We reach well beyond our membership... Information for Hospitals – we are sending posters and our introductory leaflet to hospitals together with the latest Review so that parents can find us at the earliest time. The Forum On the HeartLine website there is a Forum open to all, where those with a baby diagnosed during pregnancy, parents having problems with schools, mothers needing questions answered can find information and support. You can find the forum at www.heartline.org.uk/forum/message.html HeartLine Goes Social HeartLine has joined the world of social networking and is now featured on a Facebook and Twitter page near you! The new Facebook and Twitter sites allow us to keep you regularly updated on news and information from the heart world, as well as enabling us to bring our members together through questions and shared experiences. Feel free to join your community at www.facebook.com/heartlineuk and www.twitter.com/heartlineuk. We look forward to hearing from you. Let us know if you can think of any other ways in which we can help keep you updated. New Web In Site! The much-loved HeartLine website is due to undergo a facelift to bring it into the twenty-first century. The new website will feature an easy to use ‘knowledge hub’ that will allow readers to download info sheets and watch videos, while the news section will keep members abreast of new developments in heart conditions. In addition, the website will host a dedicated Heart of Stars page for parents of bereaved children, a HeartLine shop, simple at-aglance calendar for those looking to book our caravans or PGL activity holidays, support forum and much more. If there’s something you’d like to see within the new website, please drop us a line at admin@heartline.org.uk. Youtube Can heart children have fun? Find out at The 2011HeartLine Summer Party on youtube.com Child on Warfarin? Are you interested in monitoring your child’s INR at home? Now there is campaign being run by the AntiCoagulation Self Monitoring Alliance (ACSMA) to give patients the choice of monitoring their own (or their child’s) INR level. Some of us parents have had to buy machines and arrange test strips on private prescriptions so that our children don’t have to trail off to anticoagulation clinics during their school, and our work, hours If you are interested, please call the Office for details – 03300224466

Safe and sustainable On 4 July 2012 a Joint Committee of Primary Care Trusts met in public to decide the future configuration of children’s congenital heart services. The JCPCT considered twelve options for change and decided that Option B would provide the best quality care. This will see congenital heart networks formally structured around Specialist Surgical Centres in Bristol, Birmingham, Liverpool, Newcastle and Southampton. Great Ormond Street Hospital for Children and Evelina Children’s Hospital will lead the congenital heart networks in London and the South East. The JCPCT also agreed 160 separate quality standards that must be met by children’s heart surgical centres in the future and new arrangements for collecting, analysing and reporting outcome data. IRP undertaking independent health review Following that decision there have been a number of appeals to Jeremy Hunt the Secretary of State for Health by the hospitals which would be expected to close their heart surgery. He has appointed the Independent Reconfiguration Panel to undertake a review which is expected to report in February next year. Lord Ribeiro, Chairman of the IRP, said: “The Panel’s key focus throughout the review will be children with congenital heart disease and the quality of care they need to receive. During the course of the review we will gather evidence from a range of people and listen to all interested parties to ensure that the recommendations we make are in the best interests of the children - and their families - across England that need to access these services.” As part of the review process the IRP will visit the hospitals currently providing children’s congenital heart surgery to see the facilities and meet patients, clinicians and other staff. The IRP strives to ensure that its reviews are open and accountable to the people using the services that are affected by this review. Anyone wishing to share their views or provide new evidence as part of this review can contact the IRP in the following ways: By email: info@irpanel.org.uk In writing: IRP, 6th Floor, 157-197 Buckingham Palace Road, London SW1W 9SP By leaving a voice message on: 020 7389 8046 Pulse oximeters

We welcomed the Children’s Heart Federation campaign to introduce routine screening of newborns using a pulse oximeter (to measure a baby’s saturations- the amount of oxygen in the blood). This should pick up those who have life-threatening congenital heart defects before the fetal circulation closes and the baby’s life is endangered.. As a bonus a pulse oximeter has picked up babies with other life-threatening conditions not discernible by normal examination.

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Problems... Some of the issues our members shared with us:

Prescriptions It is really important that communication over prescribed medicines is handled so that parents, GP, pharmacist and hospital clinicians understand what and why drugs are being taken. One member reported that her daughter had been taking 0.5mls of captopril three times a day for a long period. When she went to her GP to collect the captopril, she was told by the receptionist that that had been a new dose issued – and the pharmacist told her it was increased to 1ml x 3 a day. Alarmed at such a big increase, she contacted her CLN, who said the dose had been changed 18 months earlier! Another parent said that the dose on the bottle was wrong – the GP explained that the hospital letter had been scanned in and was not very clear. Fortunately the parent had not read the bottle and gave the right dose. ‘The only other issue we have had ‘, she went on ‘ is no one told us that there was an expiry date on it that was really short, so for about six months we had been giving him out-of-date captopril.... Boots had put the captopril in their own bottles, and not kept the original labels...’ Warfarin Slightly more frightening – a parent who was sent out of hospital with a post-operative child newly prescribed

warfarin and told to find someone to check his INR (to show how well the blood anticoagulation is controlled). It really shouldn’t happen … DLA Changes in forms for children, and delay in dealing with DLA renewal claims have meant financial hardship for some HeartLine families as their award runs out. But for the many parents who depend on Motability cars to run their family’s lives, the recent long delays have been disastrous. If their DLA award runs out, they lose their right to their Motability car, to blue badges and other kinds of help. In many cases they have had to give up work, without transport or funds for childcare. When a child is recovered sufficiently to no longer need a DLA award, it is difficult but fair that it should be withdrawn. Driving people into poverty because claims are slow to be administered is an unnecessary evil. We have advised members to renew claims as early as possible, seek help with completing the forms (even experts need a fresh eye) from other parents, CAB or Contact a Family. If the award runs out before a decision is taken, contact those who may be affected – eg employers, nurseries, schools, Motability – and let them know how you are situated.

HeartLine Support The Forum on the HeartLine website continues to be a major source of support to families, especially in sharing the good and bad experiences: Andrea wrote: Hello a friend told us about your website we had had no support and were at a loss when our son had open heart surgery …. .what a lovely site you run and long may it continue … And Deidre sent this mail summing up the first year of her son’s life: I am feeling quite emotional today as it's Jude's first birthday and I'm just reliving the day he was born. I remember him being whisked away after a quick kiss and then a couple of hours later I remember my husband coming in the room with the most terrible look on his face. I was 100% sure that he was going to tell me Jude had died. As it happened, his heart had stopped for nearly 40 seconds but they got him going again and he made it through that tough day- got strong enough for his OHS at 6

20  HeartLine Annual Review 2012

days old. Never in a million years would I have imagined that he would be the happy little guy he is today. When he found out that he suffered some brain damage I thought I would be so happy just to see him smile some day, then just to hear him laugh, see him sit up...all the while not knowing if any of this would happen. There were so many days when I really doubted that we would ever leave hospital. But here we are and, miraculously, he has surpassed all expectations (ours and doctors'). He just completed his settling in week at nursery and seems so happy and relaxed. I am going back to work on Monday and I just feel so grateful for how everything has turned out. Also feel amazed and so proud of my little guy. I know he's just a baby but I look up to him so much. It's hard to explain the mix of emotions to people who haven't been through it- what a year!


Research into childrenʼs treatments Because children with heart problem sometimes need open heart surgery they are a particularly interesting group for many researchers looking into better treatments and medicines. While a child is in hospital they may have a lot of blood tests, receive several types of drug during an anaesthetic, and different kinds of ways of getting medicine – by mouth, through injections or cannulas. They often spend some time in the very controlled environment of intensive care, where everything is recorded and checked. Their families usually know in advance that surgery will take place (elective rather than emergency), so there is time to ask permission to enter a child for a research study and for parents and children to decide whether to give consent or not. So many HeartLine members who will have been asked to give consent for their child to be entered into a research study, or will be asked in the future, may find this subject of interest. The short article below has been written by Dr Kerry Woolfall, who is looking at consent processes to answer the question: how should families be asked to take part in medical research involving children?

The CONNECT study Dr Kerry Woolfall is now looking at consent in emergency settings in a study called CONNECT. Sometimes there is no time to ask if an emergency admission can be involved in a research study. In these cases consent may be sought as soon as the parent is able to have the research explained and had time to absorb the information. This is referred to as deferred consent. The CONNECT study– funded by the Wellcome Trust - is looking to help improve how consent is sought for clinical trials in emergency situations. If you’d like to find out more go look for Connect Research Study on the Liverpool University website

The RECRUIT study RECRUIT was a research study that looked at what it’s like when families are asked to take part in a Randomised Controlled Trial. RCTs are often done to find out what is the best sort of medicine to use. We did this study to improve the ways that we communicate with families about medical research involving children. The people who took part Twenty-two children and young people, sixty-two parents, nineteen doctors and twelve nurses took part, and four clinical trials of medicines for children were involved: • MASCOT (Management of asthma in school children on therapy), • MENDS (Use of melatonin in children with neurodevelopmental disorders and impaired sleep) • TIPIT (Randomised controlled trial of thyroxine in pre-term infants under 28 weeks’ gestation).and • POP (Prevention and treatment of steriod-induced osteopaenia in children and adolescents with rheumatic diseases). RECRUIT was funded by the Health Technology Assessment Programme. The findings The study found that nurses and doctors often worried about asking families about taking part in a clinical trial in case it gave them too much to think about. This was especially the case for the TIPIT and POP trial. In fact, families did not mind being asked about taking part in a trial and some parents said they would have been disappointed if they had not been asked. We found that children, young people and parents didn’t ask

doctors many questions about the trial but were made to feel that their opinions were important. Everyone thought that written information about trials could be made shorter and more straightforward. The safety of children and young people was very important and parents said they would not take part in a trial if they thought their child would not be safe. Some families thought that being asked to take part in a trial was important and exciting. Parents and children were generally happy with the way that doctors asked them about the trial and felt comfortable in saying ‘yes’ or ‘no’ to the trial as they preferred. However, parents had many questions and concerns about trial participation, yet they rarely spoke to the doctors and nurses about them. Within these questions and concerns parents had misunderstandings about the trial, which had the potential to influence their decisions about taking part. Our findings highlight how doctors and nurses involved in the recruitment of children to clinical trials need to be aware of the sorts of misunderstandings and concerns that parents might have. We recommend that parents are encouraged to ask questions, and that information is designed to emphasise [include] what parents see as important in making a decision about a clinical trial. Misunderstandings These are some of the misunderstandings that parents had about research • "I've been looking for something to help with her sleep problem for a long, long time”. The parent thought that their child was guaranteed to benefit by taking part in the trial • “I wonder who does actually make the decision, who goes on what and who doesn’t”. The decision was by computer randomisation so no person was involved in making a decision. • “[Doctor] told me, I think, they’re going to put like kind of a small tube inside him...I just didn’t like the idea from the beginning so I didn’t give it more attention”. The medication being researched was to use a catheter which was already in place and being used to administer drugs to the child. These research findings will be used to support researchers, nurses and doctors in making clinical trials better for children and their parents in the future. The findings will also be used to reassure doctors and nurses that it’s okay to ask parents and children if they would be interested in participating in a clinical trial.

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Liamʼs Tests...

Me waiting patiently for my first test.

The lady puts some stickers all over my body…..

Then she attaches wires to them. Itʼs called an electrocardiogram and it tells the computer how my heart is beating.

I then go to see the doctor. He listens to my heart with a stethoscope.

22  HeartLine Annual Review 2012


PGL short breaks 2013 We are planning to run two PGL Activity Projects this year at Boreatton Park Shrewsbury 



for 12 heart children aged 9 to 17, from 16-19 August for 12 brothers and sisters of heart children—again aged 9 to 17, from 9-12 August

You will need to deliver your child, with suitable clothing and sleeping bag, to the site by 3pm on Friday, and collect at Midday on Monday. The cost of the three night break is covered by HeartLine, including activities, accommodation, food and insurance. The breaks are organised through PGL, the market leader for activity holidays. Their policy is to help children to take their first steps towards independence and give them the opportunity to build self-confidence and make new friends. Each break will be accompanied by experienced HeartLine parents. Children choose the activities within their limitations from a wide number - abseiling, archery, arts and crafts, balls

sports, climbing, circus skills, cycling, fencing, kayaking, kite making, motor sports, orienteering, nature trails, snorkelling and swimming. There is a qualified leader for all activities, and your child’s safety is of paramount importance. Because of the limited number of places we cannot guarantee your child a place. To request a place, please complete the form below and send together with a refundable deposit of £50 for each child in the enclosed addressed envelope. If your child is accepted, this will be paid into HeartLine’s account and returned to you after your child has attended.

Name of parent: ....................................................................................................................................................................... Address: ................................................................................................................................................................................... ...............................................................................................

Post code: .............................................................................

Telephone landline: ..............................................................

Mobile: ..................................................................................

Email: .......................................................................................................................................................................................

Heart children break

Brothers and sisters break

Friday 16 August— Monday 19 August 2013

Friday 9 August— Monday 12 August 2013

Name of child 1: ....................................................................

Name of child 1: ....................................................................

Date of birth: .........................................................................

Date of birth: .........................................................................

Name of child 2: ....................................................................

Name of child 2: ....................................................................

Date of birth: .........................................................................

Date of birth: .........................................................................

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HEARTLINE MEMBERSHIP FORM Terms and conditions of membership We cannot offer HeartLine Associaiton membership if you cannot provide a postal address, or if you live outside of Britain and Ireland – but you are free to register as a member of our online forum on the heartline.org.uk website. HeartLie Assocition will record the information you give on this form on a database. We will not share your personal information with any other organisation, including any other organisation you have joined without your express permission. You, or a child over the age of 16, have the right to have details withdrawn from the database at any time. Your name ................................................................................................................................................................................ Address .................................................................................................................................................................................... Telephone .............................................................................

Email address .......................................................................

Heart Child’s name ...............................................................

Date of birth ..........................................................................

Name of heart condition ........................................................................................................................................................... If your child has other health conditions please give broad details .................................................................................................................................................................................................. .................................................................................................................................................................................................. Please give the name of the hospital and details of treatment received .................................................................................. .................................................................................................................................................................................................. .................................................................................................................................................................................................. Please give the dates of birth and whether boy or girl for any other children: Boy 

........... Girl 

................................................

Date of birth: .........................................................................

Boy 

........... Girl 

................................................

Date of birth: .........................................................................

Boy 

........... Girl 

................................................

Date of birth: .........................................................................

I agree to the terms and conditions of membership

Signed ..................................................................................

Date ......................................................................................

Donations HeartLine does not charge a membership fee, but we are of course very grateful for any support you can give us Please send me details of the 100 Club: Yes 

No 

I am making a donation through the button on www.heartline.org.uk of: £ ........................ I am enclosing a cheque for: £ ........................ I have made a donation directly to HeartLine TSB of: £ ........................ Sort code: 30-91-53 • Account No.: 03671845 I want HeartLine to reclaim tax on the above donations and understand that I must pay an amount of income tax or capital gains at least equal to the tax reclaimed on any donation in the relevant year. Name (printed) ...................................................................... Date: .....................................................................................

Signed: ..................................................................................


HeartLineĘźs Board of Trustees: Chair: Treasurer: Trustees:

Hazel Greig-Midlane Francis Johnstone Guido Barbato Sofia Kelesdiou Natalie Perseglio

Enjoy the magazine? Are you a HeartLine Association member? If so we are hoping to get more up-to-date news to you via email during 2013. With at least one mail-out a year - to make sure your postal address is up-to-date and to reach those whose mail address has changed - we should be able to stay in touch. But please check that you have let us know if your address, email address or telephone numbers are not the ones we have for you. And for those of you who have recently changed your name, please notify us – can play havoc with finding you on the database otherwise!

Contact us:

www.heartline.org.uk email: admin@heartline.org.uk Write to:

32 Little Heath, London, SE7 8HU Telephone: 033 00 22 44 66


HeartLine supports children with heart disorders and their families, whatever the condition, wherever it is treated

Website: www.heartline.org.uk

Registered Charity No. 295803


HeartLine Review 2012