Heartline 2011 Annual Review

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HeartLine was not immune to the financial crisis which is affecting so many charities. The very hard call that has to be made is between employing staff to give the best possible, but limited, service to members, or spending all funds raised on the charity’s reason for existence, trusting in volunteers to deliver the service. Several experienced Trustees had to stand down and our Chair of thirteen years also had to leave at the April 2010 AGM. Closing down our office meant losing our office manager and fundraiser who had been with us for the same period of time But hard choices have to be made – the short version of the Annual Report on pages 10 to 11 will show that we managed to get through the year in a better financial position, but with the sad loss of our office and staff, Pam, Neville and Helen. As our members come from all parts of the UK we have been negatively affected by the review of the configuration of children’s heart surgery units. Proposed reduction in the number of units means that some parents may be facing a future without the comfort and security of the team that has always treated their child. Inevitably this created competitive PR between units and parents, and between groups of our members. I have been a HeartLine member for 28 years, and became a Trustee in the hope that I could contribute experience through these most difficult of times. It has been a painful period for me. It felt as if the heart would be pulled out of HeartLine. I have to thank my fellow Trustees whose knowledge and bravery have brought us through. Not without tears. Hazel Greig-Midlane

Contents Amelia Grace. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 Fundraising for HeartLine . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Harry’s Rastelli . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 22 cms of my life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Em’s mother’s diary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 HeartLine Review . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 Seriously wrong. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13 Children’s Surgical Heart Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15 Provision locally. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15 Gentle Adventures. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17 Wetsuits. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17 A very hard experience . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18 Heart Children . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20

Amelia Grace Tetralogy of Fallot, ASD, PDA, Coronary Anomalies

Amelia’s mother writes: Amelia was born by emergency c-section in the middle of a heat wave two years ago. After an easy and stress free pregnancy she decided she would like a bit of a fuss on her arrival and got stuck on her way out. Weighing a healthy 8lb 9oz with apgar scores of 9 then 10, we were in awe of our gorgeous first born. Never awake It wasn’t until we noticed she was only breast feeding for a few minutes at a time that we suspected something was wrong. The midwives said she was fine after checking her latch and seeing that she wouldn’t drink from a bottle – therefore full up. We had to stay on the ward for three days due to my c-section. I noticed in this time that my baby seemed to be the only one never awake but as a first time mum I assumed this made me the lucky one! Just before we were discharged on the third day, a pediatrician heard murmurs in Amelia’s heart. A few other doctors filled my little cubicle, all surrounding my now naked baby on the bed checking her legs, her tummy and all having a good listen through their stethoscopes. Even at this point, I hate to say it but I felt everything was ok. I had grown up with an innocent murmur, a whooshing noise in my heart with no cause or problems and I thought she may have the same thing. She was fine I was hurrying the doctors who were looking quite perplexed by this point, one took me aside and said ‘There is a murmur in your baby’s heart that we need to check’ which confirmed my suspicions of her having our ‘family murmur’. They made us wheel her down to x-ray in her little cot, she was such a lump of a baby – so healthy looking. After the x-ray we were sent to the neonatal unit, our huge baby laying there amongst the smallest most fragile babies I had ever seen seemed to cement in my mind even more that she was fine. A few hours later, after much begging pleading and almost arguing we managed to get discharged with an appointment for Amelia to see a specialist who would be coming from another hospital in a few weeks time. I was a little worried then but she had been thoroughly checked out before we had left so surely they wouldn’t let her go if something was wrong. Panted – normal for murmurs! We enjoyed six blissful weeks at home adjusting to sleepless nights and showing her off to family. Her cardiac appointment barely even entered my mind, my baby looked well, breastfeeding was a doddle I had no idea what other mums complained about. She just slept, had a feed for five minutes then slept again! I remember the health visitor visiting our house and we mentioned that Amelia panted; she told me that babies with murmurs do pant sometimes which I thought was strange. My two year old niece even imitated Amelia’s panting when she met her it was that noticeable. Tissues on the table The day of her cardiac appointment came and I felt a

nagging feeling in the pit of my stomach. It didn’t go all day, as she slept in my arms in the waiting room, as she screamed so much as they scanned her and even more so when I watched the consultant disappear and not come back for a very long time. When he returned he was followed by a petite, kind faced nurse who waved us through a set of double doors into a room which resembled a room set in Ikea with flowers on the sides and tissues on the table. Tissues on the table…. ‘I am afraid Amelia has Tetralogy of Fallot; this means she will need open heart surgery or she will not see pass one’ Words followed but they made no sense to me, holes, valves, diagrams similar to ones I saw in science class and I was now wishing I had paid attention to. He was scribbling all over the diagram, destroying my baby’s heart, removing one part, adding in another, scribbling out a huge section in the middle, it was a mess. I just cried, with my half naked innocent baby scrunched up on my lap, I cried. Wonderfully supportive The days and weeks following her diagnosis were dark. We were visited weekly by the neonatal nurses who would check her feeding, oxygen saturations and breathing. They were wonderfully supportive and I would live for their visits anxious for them to tell me my baby was ok. I spent time reading about Tetralogy of Fallot, the hypoxic spells (tet spells), the defects and how they would fix them. Every website seemed so positive that with the new tetralogy repair surgery the children affected would grow up happy, able and healthy. We were initially told Amelia would have surgery at three months, but she reached three months remaining fairly well. Feeding was hard work; I gave up breastfeeding as I couldn’t stand not knowing if she had fed enough and changed to formula drinking – tiny 60ml bottles. She was changed quite quickly to calorie packed formula which helped her keep gaining weight. She had her first hypoxic spell around this time.

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Downhill She went downhill from here, she vomited all the time. The opposite to reflux we would keep her laying down after a feed in hope it would stay down, the doctors thought her body couldn’t cope with the fluid and her enlarged heart was pressing onto her stomach causing her to vomit. I can’t explain what it feels like to spend an hour feeding a baby 60-90mls of formula for it all to come back out just moments later, when you know just how important every single drop of that milk was.

with people covered up so much all I could see were slits of eyes peeping over the tops of masks and peering from under hats.

One morning a newsletter plopped through my letterbox, HeartLine. I had forgotten about the charity. I found a website address for their forums and finally had a release for my fears and worries where they were understood truly by those who had been through the same.

Her recovery was tough at first, she has always been a determined little girl and she had been given the maximum amount of morphine and was still trying to pull her drains out – this is whilst on life support! She ended up wrapped up in a sheet and her arms in splints to protect her from herself. She took a while to come off life support because of the amount of drugs they ended up giving her. It was quite scary watching them take her breathing tube out and her chest not rising, they always ended up bagging her and putting her back on life support. After a day of it the nurse refused to try anymore so they closed off the ward and tried again, I don’t think they realised we could see through two sets of windows from the corridor straight to her bed and watched everything that was going on. When we went back she only had an oxygen mask on and was doing well.

Heart surgery sooner Amelia began to suffer hypoxic spells more regularly; we were often in hospital waiting for new medications to be administered to try to prevent the spells. At six months they decided she needed angioplasty, an operation where they enter through a blood vessel in the groin, go into the heart and stretch the pulmonary artery hopefully allowing enough blood to reach her lungs. Amelia ended up with just a cardiac catheter not angioplasty as once they saw her heart using the camera they decided she needed the open heart surgery sooner rather than later. She didn’t recover very well from the cardiac catheter; she was so blue when she came round from the general anaesthetic. Her SATs were sitting so low and at one point dropped to 30. Surprisingly the hospital nurse didn’t do much about this; I was sat on a chair with my blue baby in my arms holding an oxygen mask on her face with a SATs monitor on her toe constantly bleeping as her oxygen levels dropped. I was petrified. When the consultant came around to discharge us he read her notes and saw her breathing so we were sent to the cardiac ward where a team of medical staff were waiting for us. After trying to prep her for surgery they chose to let her recover in a quiet space with us. This worked! Glad to have a date The next evening we were discharged with the promise of her open heart surgery being within four weeks. My feelings about this always surprise people who have not experienced a heart child, I was glad we had a date for surgery. Yes it was a scary thing but she was going to be well afterwards. We would be able to walk around shops without people telling me she looked cold, or staring because in all honesty sometimes she just didn’t look very well at all. Her open heart surgery would be at Great Ormond Street, our chosen hospital. I had read about other people’s experiences of the hospital through my HeartLine membership and felt confident they were right for Amelia. On the day we went there Amelia was calm all morning but an emergency case had gone before us so we were left waiting until 2pm; she was distressed and hungry by then so they gave her some meds to let her sleep. I remember handing her over in a very cold room, almost morgue like,

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Shocked Amelia’s operation took nearly six hours; we busied ourselves in a small hospital cafeteria looking around at all of the children, wondering what battles they were fighting. When we were finally able to see Amelia after her operation I was totally shocked and almost passed out right there next to her bed in CICU!

Stridor She was discharged just four days after her open heart surgery. That night we watched her splashing away in the bath, shocked at how much she had been through and how well she was. Unfortunately she developed postoperative stridor, a swollen breathing tube, and was readmitted for another couple of days whilst she had steroids.

She will need further operations; we know that her pulmonary artery/valve is severely narrowed again just a year after her open heart. Her coronary anomalies make it too dangerous to remove her valve so she will end up with a shunt which will need to be replaced throughout her life time. We remain very hopeful that she will reach her teens before this is needed and who knows what medical marvels will have happened by then. Capable of anything Amelia is wonderful, a real advocate that heart defects don’t mean a life of hardship. She attends a dance class and regularly goes swimming at only two. I don’t know how she will feel about having a heart defect when she is older but I hope she will grow up knowing that she is capable of anything, she has already fought the hardest fight for life and won.

Terms used Tetralogy of Fallot: four heart defects – a hole between the left and right ventricles with an overriding aorta (picking up blue blood from the right ventricle as well as red from the left), pulmonary stenosis (a narrowing in the pulmonary valve), and a thickened right ventricle. ASD: atrial septal defect, a hole between the right and left atrium PDA: patent ductus arteriosus, a blood vessel which is part of the fetus’ circulation and should close at or shortly after birth Coronary anomalies: defects in the coronary arteries which should provide oxygen rich blood to the heart. Apgar: check of new born babies – the highest score is 10 based on colour of skin, pulse rate, reaction, activity, and respiration

Open heart surgery: the heart is stopped while surgery is performed on it Oxygen saturations: amount of oxygen in the blood Hypoxic: lack of oxygen Pulmonary artery: the blood vessel that carries blue blood from the heart to the lungs Cardiac catheter: a fine tube which can be passed through a vein into the heart where it can used for diagnosis – measure pressures, injecting dye, taking samples – or treatment such as, inserting devices or widening a valve. SATs: short for oxygen saturation: a measure of the amount of oxygen in the blood CICU: children’s intensive care unit Morphine: powerful painkiller

Innocent murmur: a sound coming from the heart which doesn’t indicate a heart condition

Steroids: drugs which reduce swelling

X-ray: a test using rays to see the more solid structures in the body

Pulmonary valve: the valve which controls blood flow between the right ventricle of the heart and the pulmonary artery

Prenatal Support Jan Kingsley, HeartLine’s Prenatal Support parent writes: Alex’s heart problem (Transposition of the great arteries complex) was diagnosed when I was about 20 weeks into my pregnancy. This was the first time this particular condition had been detected before birth in the UK and Europe and led me to start the Heartline Prenatal support group a few years later for parents in a similar position. I’m delighted to say Alex is now fit, healthy and enjoying life at university. It’s hard to believe he’s just celebrated his 21st birthday. If you know of any parents who have had their baby’s heart problem diagnosed during pregnancy please let them know that HeartLine can offer help, support and advice.

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Fundraising for HeartLine Theo Walker Fund Lucy Walker wrote: Theo’s daddy and his friends ran thirty miles coast to coast in Menorca. It was tough and challenging but they all did it with enthusiasm and energy which got them through it all – it took them 6.5 hours starting at 3.15 in the morning! They have raised an incredible amount of money – £10,000 – with half of this going to HeartLine and the other half going to Little Hearts Matter. uk.virginmoneygiving.com/team/coast-to-coast

Any support gratefully received You can see where HeartLine wants/needs to help families by looking at the projects we hope to support on page 12. We are grateful for any support you can give us, such as On the 5th of each month donate £5 by texting HTLN00 £5 to 70070 – if you are too busy to help with fundraising, look at your calendar for a regular reminder! The 100 club – enter for a draw every month for a share of the monthly £2 donations. There’s a form on the website or contact us Want to jump out of a plane? – Go on then – contact HeartLine or there’s a form on the website to participate in skydiving Organise a local event – whatever you would like to do, let us know and we’ll provide you with posters Raising awareness is also very important for us – could you donate a Heart Children book to your local library? Help out at events around the country? Give a talk to your school or social club?

HeartLine will always be close to my heart, as this was where I came for support when I first heard about Theo’s condition when he was diagnosed at his twenty week scan and from then on I always felt I had people I could turn to or share my fears with. I know that if Theo was here today I would have always known that I would not feel alone on the journey with his heart condition. However even though Theo isn’t with us, I still don’t feel alone with HeartLine. I have made some wonderful friends while I have being going through the bereavement process (and still continue to) and I can’t thank you all enough and that’s why we will always continue to you support HeartLine in anyway we can.

Ed – to read Lucy’s life-enhancing story see www.theowalkerfund.com Ride the Dream ➨ In an amazing nine days Darren Gill rode his bike from Lands End to John O’Groats for HeartLine. Darren’s nephew Lewis was born with a serious heart problem and he wrote that HeartLine has given Lewis and his family fantastic support since he was born. You can read the story and show your appreciation for his efforts at http://www.justgiving.com/Darren-Gill

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Contact HeartLine through our website, by emailing admin@heartline.org.uk, by calling 033 00 22 44 66, or by writing to HeartLine, 32 Little Heath, London, SE7 8HU

Harry’s Rastelli Amanda writes: I last wrote in the HeartLine magazine in 2009 about my son Harry and I just wanted to update on how he is doing. Harry was born five weeks early and, at a day old, we were told he had a heart defect: pulmonary atresia, vsd and mapcas, and vater syndrome. He has had two BT shunts, one at four days old and another at one year old. Very blue Last year we noticed that he was starting to get very tired and his oxygen saturations were getting lower – they were looking at around 72 when resting and going into 50’s when active, and he was starting to look very blue. So it was decided that he would need further surgery – the Rastelli procedure which we were told will make his heart as normal as possible, and give him higher sats – somewhere in the high 90’s. We were told the risks involved in the operation and we had to sign the consent for surgery. My hand was shaking while signing it but I knew it had to be done. Then on 13 June 2010, the day before the op, we had to take Harry for blood tests etc. We were allowed home and had to come back next day – we were given nil by mouth instructions. Laughing at the ceiling Next day we saw the anaesthetist and Harry had his premed, which we think made him start hallucinating as he was laughing at the ceiling and laughing at anything and everything like he was drunk! It was such a scary time but he did really make us laugh. Harry went to theatre at one o’clock. It never gets any easier handing them over at the theatre. I gave Harry a big kiss and Paul went in as they put him to sleep. I stayed outside with the nurse from the ward and a few seconds later Paul came out. We did our usual walk around the hospital and went to the canteen for some lunch. Time just seemed to stand still until, at 8.30, we were told we could go up to PICU and see Harry. Really poorly I was just so pleased the op was over and we could see him but as we got there we were told that we had to wait in the parents’ room. I just knew something was wrong, then some other parents came in and we started talking to them and they said they had been told to leave the intensive care unit as a child was really poorly and there were a lot of doctors and nurses running around. Little did I know it was my boy in there that was causing all this. Then a nurse came out and told us Harry had had to be resuscitated as he had gone into a cardiac arrest. It took a while for the surgeon to come at talk to us as the nurses said they would not leave him until they were happy he was stable. Some brain damage? When the surgeon came out to talk to us he said they had had to open his chest and massage his heart and had to shock him. The arrest lasted for five minutes. He said he thought he was ok but could not be sure and that there could be some brain damage with his heart stopping. I could not believe what he was telling us. I know there are

risks but never thought it would happen to our little boy. I just wanted to see him. The nurses took us through about an hour later. His chest was still open but we could not see much, there were so many tubes wires going into him, and he was also on an external pacemaker as his heart was not in rhythm. He kept getting high temps and had to be cooled right down, so was placed on a special cooling blanket. Nodding As a few days went by he seemed to be responding to us as we talked to him. He was still on the ventilator and very heavily sedated but he was nodding when we were asking him questions and the doctor said it was a good sign that he was responding to us. Harry seemed to have good and bad days and when it was a bad day it really got us down. The doctors and nurses who were looking after him were lovely. They helped us out too for support. After two weeks of being on the ventilator he was making some breaths on his own and he went on to cpap to give him support with his breathing, but was doing it on his own. A step back Then they took breathing tube out to see if he could cope without it and he did, but seemed to be really struggling and we could see it was tiring him out. The next day the physio came in to suction his chest and his sats just

HeartLine Annual Review 2011


lost more and more weight. Happy brave boy Yes, it’s been a tough year but the ng tube is out, he has put on weight and has started nursery, which he loves, and has made lots of new friends who all fuss over him and want to look after him.

dropped and dropped and they got to 47 and docs rushed in to put him back on the ventilator. It was like a step back but we knew it was for the best for him. The doctor came and talked to us and we were told they would try again in a few days to take him off the ventilator after a rest, and if he did not manage coming off it again they would maybe think of doing a tracheostomy. I really did not want this, but if he had to have it and it was the best option for him so be it. Mam’s knee The next time he came off the vent was different – he coped much better. He tried to talk to us, but his voice was very weak and we could not hear what he was trying to say. So I put my ear to his mouth and he whispered ‘Mam’s knee’. I was sobbing. We then knew there were no problems from the arrest and I got my first cuddle in three weeks. Things were looking up, but they noticed his leg was very swollen and we found out he had a blood clot in his leg. He would need daily injections for the next three to six months to clear it. A few days went by and he was getting better and better. The chest drains and pacemaker had gone. He was then transferred from PICU to the ward. Yeah! Closer to home, I thought. The nurses showed me how to do the injections in his leg for when we got home, rather than having to come into hospital everyday.

Even though his heart function is not great he seems to be managing it well with sats now in the high 90’s. They have never been that high before and I still can’t get over them being like that. His colour is so much better. He looks so well and nothing gets him down. He is a very happy brave boy and we all, Mammy, Daddy and big brothers Kieran and Jake, love him lots.

Terms used Pulmonary atresia: the pulmonary valve is blocked or missing VSD: ventricular septal defect – a hole between the left and right ventricles, the pumping chambers of the heart MAPCAS: major aortopulmonary collaterals – these are blood vesels that have grown to carry blood to the lungs from the heart, to compensate for the pulmonary atresia Vater Syndrome: a collection of three or more of the following have defects in a baby: vertebrae (spine), anus and rectum, heart, trachea oesophagus, radius, and kidney BT shunts: making connections between arteries to the arms and the lungs Oxygen saturations: the amount of oxygen in the blood

Home So after a two week stay on the ward and a three week stay on PICU we were told we could go home. It was great to all be back home and sleeping in our own beds. I kept checking on him all night to make sure he was ok. But it was short lived – not long after being home Harry got admitted to hospital for a week as it turned out that he started aspirating food and fluid into his lungs. We were told it was dangerous for him to eat or drink anything so it was decided he had to be ng tube fed.

Rastelli: a surgical procedure which involves fitting a conduit – a tube – containing a valve between the right ventricle and the pulmonary artery

So tiny He had to stay nil by mouth for two months – it was awful. I was really fed up. thinking why is my child going through all this? It’s just not fair. Please give him a break. He must have thought we were starving him. He was so tiny and

Tracheostomy: a small tube inserted into a hole in the windpipe to help breathing

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PICU: Paediatric Intensive Care Unit Resuscitated: revived Cardiac arrest: heart stops beating Cpap: constant positive airway presssure – a way of keeping the small air spaces open

NG tube: nasograstric tube – inserted through the nose into the stomach to help with feeding.

22cms of my life The very wonderful Em writes: There are 22 players at the start of any football match. Superextraordinarisimo is a word with 22 letters. It is the longest word in the Spanish language. It means `extraordinary’. Psychologically, 22 is the easiest number to recognize by the human brain due to its curved shape. A “Catch 22” situation is one that; no matter which way you go, there is an undesired and negative result or outcome. 22cm is the length of the scar that will be forever on my chest, and 22 is the number of days I spent on life support. I like who it makes me It would be much easier if I was writing this at the age of 22 as it would add great comedy value and witty standing to what I’m about to say but sadly I’m not and I can’t; I’m only at the meek age of 17. God doesn’t want this article to flow properly and couldn’t help me out by shortening the length of my scar, darn you Lord! You’d think if I was addressing God I’d be asking for the removal of my scar and the reasons alongside it – but I like my scar. I like my heart condition. I like who it makes me. Of course I don’t high five passing hospital patients at the genius luck of having a life-long medical issue. But I don’t hate the world for how it made me. For as long as I can remember my heart has been a hot topic and something to be looked after. I was born with ALCAPA (Anomalous Left Coronary Artery from the Pulmonary Artery; if you want to get clever and Google it!) I’m not going to bore you with its details but in summary my heart is plumbed differently and works harder than other ‘normal’ hearts (I dislike referring to myself as not-normal or with an ‘abnormal condition’ because as far as I’m concerned, I’m a common Joe – and who the hell is Joe anyway?) Poked and prodded I had an operation at a very young age to correct what Mother Nature had failed at and it meant I would be on medication for the remainder of my years and require regular checkups at the hospital – for years I travelled back and forth on the dreaded British Rail networks to see doctors and consultants and specialists. I’ve been poked and prodded

and forced to cough and “breathe in now for me please”. I’ve had dreaded MRI scans where you feel more trapped than Chilean miners or fitness tests that were clearly devised by a sick health freak to make you run unattractively on a treadmill just to prove how unfit you actually are! I’ve had more surgical procedures than Katie Price. Yet I still love how I was born and who it made me, my scar is my life, my heart is obviously my life; without it I wouldn’t be here (stating the obvious) but I mean it – my heart works: it beats just like yours, it works and that’s all I care about. It’s given me 17 years of non stop entertainment and I will never let it stop me, I live my life just like the rest of you. Don’t feel sorry for me My heart condition has made me appreciate the life I lead, the people I know, the places I go (starting to sound like a TakeThat song). People try to wrap me up in cotton wool, protect me from the big bad world because Em’s poor heart won’t take it: don’t feel sorry for me. Feel sorry for the children still fighting for a life I’m already living or the fact that the economy and the government are heading down a public toilet; or that you might die in 2012 (very unlikely, I have a holiday booked in 2013). The point of this teenage rant is that as I begin to age, (it’s all downhill from here!) and experience the transition to adult care, I feel that I’ve had a superextraordinarisimo life so far (see what I did there) not in spite of my heart condition but almost because of it. A great life I have a great life to look forward to; and my 22cm scar will be there every step of the way.

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Em’s mother’s diary Jackie wrote about the day of Em’s diagnosis and subsequent treatment in her diary – this is an extract from that time. 4 February 1994 – The Bad News …. back I went to the consultant’s clinic where another doctor said he thought she had RSV. He watched her feed and said if she was worse the next day to come back. We got in the car and she was promptly sick again – I burst into tears. She was about fourteen weeks old by now. Sats monitor not working The next day she looked just awful. She was grey and struggling for breath. It sounded like she was drowning. (The cardiologist thinks she’d had a heart attack during the night.) We rushed her back to the ward where they put her on a sats monitor and did some tests for RSV. The nurse commented that the sats machine wasn’t working properly because the oxygen levels were 100% and her heart rate was 200 (and that couldn’t be right??). We went for a chest x-ray and when we got back they put her on another monitor. Problem with her heart Within ten minutes of us getting back from x-ray all hell broke loose. The film showed that her heart was so enlarged that it was collapsing her left lung. And the new monitor showed her heart rate was still 200. The paediatrician came to tell us that she had a problem with her heart, possibly a virus, and she would need a scan. At this point I just shut off. I think, they were asking me if I needed to know anything but I just said ‘No, its fine’!! Even when they talked about going to the Children’s Hospital (Birmingham) it just didn’t register with me. They said she couldn’t go for the scan for a while, so I left her with her dad and went to collect the boys from school and nursery. When I got back home, he was on the phone. The ambulance had arrived to take her so he had to go; he was expecting to have the scan and come back. Denial I truly regret leaving her with Gary that day. I was in complete denial of the seriousness of the situation I think. I don’t regret it because he wasn’t up to the job – he was and is more than up to the job. It’s just that I wasn’t there for him or for Emily at possibly the worst moment ... Well when he got to Birmingham Children’s Hospital it was a different story. He says that when the doors opened a sea of people greeted him, a full PICU team, who took Emily from him. Even before the echo they said that from the ECG they could tell that she either had a serious congenital defect or a virus and either way they weren’t sure they could do anything for her. They wanted me there immediately.

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Gary doesn’t speak about how he felt at that point but I know he was badly shocked, close to breaking down I think. I heard it in his voice. It must have been a dreadful call to make as well as to receive. Two precious minutes You can imagine how I felt; they were fifty miles away. My dad drove me and I thought it was the worst hour of my life (little did I know). She’d gone into cardiogenic shock and when I arrived they had ventilated her and were basically waiting for me to say goodbye. So I had two precious minutes with her before they went to catheter and then hopefully to surgery. After a couple of hours they came to say that she had Anomalous Left Coronary Artery from Pulmonary Artery (ALCAPA) and she’d gone to theatre, plus she did have bronchiolitis which was an added risk. Her LV function was so poor they could only hope that she’d get through. I vaguely remember someone bringing us tea and explaining about the defect but apart from that the night is a complete blur.

Terms used RSV: respiratory syncytial virus – a virus which can cause bronchiolitis Sats monitor: a monitor of the amount of oxygen saturation in the blood Cardiogenic shock: a state in which the heart has been damaged so much that it is unable to supply enough blood to the organs of the body. Catheter: a long, fine plastic tube. A cardiac catheter can be passed through a vein or artery into the heart where it can be used to diagnose or correct problems. Anomalous Left Coronary Artery from Pulmonary Artery: the coronary artery which should carry oxygen-rich blood from the aorta to the left side of the heart, is connected to the pulmonary artery. This means that the left heart receives oxygen-poor blood and as a result starts to fail. Bronchiolitis: a respiratory infection which causes the little sacs in the lungs to become inflamed– this is usually a mild condition, but can be serious in children with heart conditions. LV function: the pumping of blood by the left ventricle

HeartLine Review To keep you up-to-date this review covers What we do, How HeartLine makes a difference, Annual Report 2009-2010 and Into the future – a brief review of what has been happening since November 2010 – a time of major change for our charity – and our hopes for the future.

What we do HeartLine is run by parents for parents. We aim to offer support to families with children with heart conditions, whatever the condition is, wherever the child is treated, across the UK and Ireland. The stress of finding that a child has a heart condition, frequently before he or she is born, sometimes after a panicked struggle to get health problems diagnosed, or at a later stage as a result of another illness, can make finding support difficult. Again and again we hear parents bemoan the fact that they did not hear of HeartLine at the time they were most anxious, and needed the comfort of someone who had been through the same experience.

One morning a newsletter plopped through my letterbox, HeartLine. I had forgotten about the charity. I found a website address for their forums and finally had a release for my fears and worries where they were understood truly by those who had been through the same – page 2. The majority of our children grow up to lead fulfilling lives.

Em writes: I still love how I was born and who it made me, my scar is my life, my heart is obviously my life; without it I wouldn’t be here (stating the obvious) but I mean it – my heart works: it beats just like yours, it works and that’s all I care about. It’s given me 17 years of non-stop entertainment and I will never let it stop me, I live my life just like the rest of you. – page 7. Their parents, too, often stay with us, supporting younger families facing the problems that heart conditions bring, injecting fellow feeling and optimism from their own experience –Yes, it’s been a tough year but the NG tube is out, he has put on weight and has started nursery, which he loves, and has make lots of new friends who all fuss over him and want to look after him. – page 6. Sadly many of our members have suffered a bereavement. We are fortunate in that they, too, often remain with us, offering their hard won experience and empathy to others.

How HeartLine makes a difference The first call on our attention is reaching out to families at an early stage. We do this by providing packs of information to the hospitals that treat heart children. The hospital pack: The pack includes a membership form, invitation to join and information to join HeartLine, as well as our latest magazine, colouring booklets sharing hospital experiences with children, and basic information about feeding, and dental care. If a donation has specified a hospital for receipt of Heart Children: a practical handbook for parents, this can be included in the pack. Otherwise a flier for the book is included – p20. Website Forums: Our forums on the website are open to families whether they are members of HeartLine or not. Here expectant mothers who have just heard their baby has a heart problem can ask anonymously for the information that only families can provide about the experience of caring for a child with a cardiac condition, sometimes even before it is discussed with a partner or family. Many heart children are problem feeders, and sharing information and advice on feeding is very helpful to those whose infant will only eat the odd chocolate button. Sending encouragement and help to those whose child is undergoing surgery, celebrating the tiny successes of smiling, standing, walking, sympathising with those whose lives have been torn apart by grief – all are the stuff of our community online.

Advice: We can offer advice by telephone, by putting families in touch with others who have the same kind of problem, providing an internet forum, sending regular publications. We often are told ‘I don’t know what I would have done without HeartLine – until I read a story in the magazine I had no idea there were other children with his heart problem around.’ Other areas where families can be hugely mutually supportive relate to eating – heart children can be notoriously poor eaters – dealing with school, nurseries, employers, hospital appointments, and periods when a child is an inpatient. JD’s mother describes how she turned to HeartLine when she took her son home from hospital without enough oral syringes essential for accurate dosage – see page 19 Information from HeartLine families has been fed through to policy-makers – our need for maternity services adjacent to surgical units, the development needed in local services, the improvement in waiting times and communication around surgery – and some are reflected in the Standards against which children’s heart services should be measured in future. We still need more attention paid to local services – the local children’s heart network: because this is where a child’s life is often saved – by the skill of the prenatal sonographer, by the knowledgeable midwife or health visitor, by the GP who can refer to a specialist local pediatrician, the accuracy of the local HeartLine Annual Review 2011


pharmacy, the availability of a well equipped accident and emergency department. Without these services some children will die. See page 16. Member only benefits: Our members are entitled to nominate their children for short PGL activity holidays in the summer (one for heart children, one for their siblings). We have two caravans, one in Mablethorpe, Lincs, the other in the New Forest, where families can spend subsidised breaks. Often swimming is an activity children with heart conditions can participate in and enjoy, but poor circulation means that they lose body heat very quickly, and become

too cold to stay in the water. HeartLine provides wetsuits for children from babies to strapping teens. A HeartLine summer party is held each year – at the beautiful Wetlands and Wildfowl Trust in the last few years. The comprehensive Heart Children book is available at a much reduced price to members: this covers many children’s congenital and acquired heart conditions, prenatal diagnosis, diagnostic tests, feeding, treatments including medicines, surgeries and catheter procedures, consenting, nursery, school, benefits, bereavement and sources of help.

Annual Report 2009- 2010 The HeartLine financial year runs from November to October. If you would like to see a full copy of the Annual Accounts/Trustees Report you can download it from the Charity Commission website or request it from HeartLine.

One more year at the same rate of deficit would have seen the closure of HeartLine – our previous history showed a pattern of deficits:

Our cash flow for the year is summarised in the table below:

The Trustees elected in April 2010 took the difficult decisions to close the Camberley Office and maintain HeartLine without office support. This was entirely due to the economic climate and its severely detrimental effect upon HeartLine’s financial stability. Failure to restructure would have seen our charity fold within a matter of months. The Office was closed in September 2010. We had to say goodbye with thanks and many regrets to Pam Lawrence, long serving office manager, Neville Terry, our fundraiser for many years, Helen Baker and Lorna Russell. The

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Trustees took on the work as far as possible, with support from our website Forum moderators and other volunteers, and were able to maintain projects successfully to the end of the 2010 year. Although we have seen significantly reduced donations through losing our employed fundraiser, our staff and accountancy costs have reduced from £80,000 in 2009-10 to an expected £3,000 in 2010-11, thus ensuring the survival of HeartLine, while maintaining our services to our members.

Projects 2009-10 Heart Children – HeartLine published a new edition in October 2009. We have had some donations to enable us to provide books to nominated hospitals, but are having to charge our members for copies to cover production costs. The Magazine continued to maintain its excellent standards, and was published three times during the year. Hospital Packs are still very popular with hospitals and out-patient clinics, but fundraising was slow during the year for this project. The two holiday caravans continue to be appreciated by our members. The Trustees reviewed both caravans and assessed their functional and commercial viability towards the end of the year and agreed to support them with remedial plans for the 2010 – 2011 year Sailing day activity was curtailed due to lack of funds and the yacht we used being laid up for repairs. The PGL Adventure Weekends were a great success – they are run as separate heart children and sibling weekends, allowing children to meet and make friends with children in similar or identical situations. We raised funds to supply wet suits to children with heart conditions. These suits keep children warm in the water so that they can get the exercise that they need. Demand outstripped funds raised. The Summer Party was held once again at the London Wetland Centre with the invaluable support of Goldman Sachs, both financial and enthusiastic input from their staff. Gratitude for support Sadly 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. And we have to mention: Anya Rowson – for her years as a Trustee of HeartLine, Treasurer and Chair, and her continuing support especially with the Forums

Anya Rowson stood down as Chair of the Board of Trustees after 13 years.

Kevin Ford – for his many years as Trustee, Treasurer and Vice Chair of HeartLine, and his continuing essential support both administrative and practical. Lisa Casey – for her support and years of Trustee input Alison Keen – for her support and long standing as Trustee and Vice Chair Linda Hardy – for her long standing as a Trustee Clare Burgess, Hazel Greig-Midlane, Annette Jackson, Wendy Lynch, Caroline Mutton, Darren Pickard and Helen Woods – for their work as Trustee/volunteer administrators from April 2010 Sarah Sparkes – for her work as Chair of Trustees and for undertaking much administrative work Kate Hatcher, Kerry M-S, Sheran Taylor and Val Thubbron – for their roles as Senior Moderators on the HeartLine forums Sarah Batt, Annabel Blanch, Liz and Keith Collins, Shelly Coombs, Rosie Freeman, Sue Gearing, Kate Hatcher, Margaret Horstead, Annette Jackson, Jan Kingsly, Jan Lyons, Elaine Murray-Bell and Val Thubbron – for their work as members of the Core Support group Children’s Heart Federation – for provision of a desk in their Office, and meeting facilities for the Trustees.

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Into the future Together with heart children or sibling peers, and in safe surroundings, where he or she is not ‘different’, a child’s confidence in themselves as individuals and as team players can grow enormously. These holidays are accompanied by experienced parents as well as benefiting from the PGL expertise. To send a child for this very special experience costs £94.

Riding the dream The Trustees are pleased to report the restructuring of HeartLine Association is proving to be a success, with HeartLine emerging as a stronger more stable organization ready to face the future with confidence. But despite making savings of nearly £5,500 a month we need to seek increased funding to maintain the level of service of previous years Magazine Although much material can be presented via the internet, we have found that posting out our magazine is a major way of preserving contact with and between families. Postal costs are making this prohibitive and we have cut the number of full magazines and replaced with short newsletters to keep people up-to-date. These cannot fulfil the same function and we badly need funding to preserve three magazines a year at a cost of £6,500.

Heart Children book Members of HeartLine are charged a minimal sum for Heart Children – a practical handbook for parents. We would like to donate a copy to all families who need the wide ranging advice it contains – this would cost around £10,000. We are also in desperate need of experience and funds to be able to translate this latest version into various other languages at a cost of around £5,000. Caravans We try to keep costs as low as possible so that families who are hard-pressed to find money for holidays can enjoy the facilities the caravans offer. Major repairs or even replacement may be needed if we are to keep this much appreciated service – we need to raise £3,000 urgently so that caravans are fit-for-purpose next season. It also costs us £8,000 per year to be able to provide the caravans for families. PGL Adventure Holidays Everyone whose child has enjoyed these short breaks have seen what a difference they can make. Many of the heart children have never been away from their families before, let alone undertaken a range of enviably robust activities! The brothers and sisters of heart children can lose out in many ways. Not being the main focus of a family’s concern can harm a child’s sense of self. Often their activities have been restricted by the health problems of their brother or sister.

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Hospital packs Where do people find parent-to-parent support? We are the only member organisation for families whatever the heart condition their child suffers from, wherever the child is treated. Reaching families at the time they need us most is very difficult – the hospital pack is a way of making that connection. We are grateful to the hospitals which hand them out – but we know that 5000 children a year are born with heart defects, and many more acquire heart conditions during childhood – we need to raise at least £10,000 to get to those most in need of support. Sailing holidays As HeartLine moves into a more stable future, we will be looking to promote this activity further as it offers a great opportunity for relaxation and bonding for our member families Summer party Our summer party has been held in London over the last few years. Some families do travel from as far as Glasgow to participate, but we would like to run similar events in the North and South West to give more Mums and Dads and children the opportunity to enjoy the positive experiences that these occasions offer. Website We currently run a main website which provides information and resources to families, plus a lively discussion forum for members and guests, which provides the much needed support for families at various stages of dealing with child heart conditions. We also run a translated website to provide information to families whose language is not English. The cost of running these and our online email/storage accounts is around £1,700 per year. Heart of Stars Bereaved members should be able to look to HeartLine for support and to contribute their own hard won experience to others. We want to build on our Heart of Stars to strengthen relationships and links with bereaved families as members of our community, and intend to try to raise £1,500 towards improving the function of the Heart of Stars and producing remembrance cards. Wet suits Children with heart conditions often have very poor circulation and can’t maintain their body temperature when swimming, even in heated pools. As swimming can be a safe form of exercise for children unable to participate in sports, a wet suit can be an advantage. Offering wet suits from baby size upwards allows parents to feel confident in getting their child involved. We need to raise £500 to meet current demand, and around £1,000 per year to provide this service.

Seriously wrong We tend to think that, with all the diagnostic equipment available, most children with serious congenital heart defects are diagnosed before or shortly after birth. Unfortunately that isn’t so, and the Think Heart campaign which starts in November this year, is to encourage local health services to check whether symptoms are being caused by a heart condition. Marije, Ian and Jamie are one of HeartLine’s newest families, and they experienced the shock of a late diagnosis. Marije writes: On the 29 May 2009, after forty-two weeks of pregnancy, our gorgeous little boy Jamie was born. She knew what she was talking about … He never cried when he came out and his hands and feet looked really blue, completely different from the rest of his body. Ian asked the midwife if this was normal and she replied ‘his blood circulation is not up to scratch’. So as a new parent, no older children, both me and Ian thought she knew what she was talking about. Fine I tried breastfeeding, but Jamie didn’t seem to be interested. After three weeks of struggling, we switched to bottles, which seemed to work much better, although Jamie never seemed too hungry or desperate for his bottle. He gained weight, kept growing and reached all his milestones when he was supposed to reach them. At his ten month check up, the health visitor said he looked fine and his development was fine as well. Up until this point, we never even noticed any difference between him and any other baby. Just after his first birthday, when he started to get a bit more mobile, we noticed he would get quite breathless and he would go blue around his mouth and cheeks. After quite a few comments from different people (is he cold? does he have asthma? etc) we started to worry a little bit and decided to get him checked out at the GP. Obviously we weren’t too worried because we went on holiday to Italy first! I rang the GP the week after, thinking it might be a chest infection or, worst case scenario, asthma. Tests So we took Jamie to the GP on 21 September 2010 and told him about our concerns. He listened to Jamie’s heart and asked some questions and asked us to wait in the waiting room because he wanted to speak to a pediatric doctor at the local hospital. A few minutes later, the GP came to tell us that we had to go straight to our local hospital to run some tests. By then, we still didn’t realise anything bad was going on and expected to be home in a few hours. We ended up on children’s A&E and they checked his sats, which were just above 50%. The nurse thought the machine was broken and got a new one which also showed sats of around 50-60%. Something seriously wrong I took Jamie for an x-ray and a while later a consultant came to tell us we had to stay overnight. We would be referred to the Royal Brompton hospital in London the next day. He also told us there was something wrong with Jamie’s heart and he possibly needed heart surgery.

Even then, I still didn’t realise it was that bad. The next day, we were taken to Royal Brompton and after an echo and another x-ray, the consultant came to tell us there was something seriously wrong with Jamie’s heart. He said Jamie needed open-heart surgery and all I could think was; ‘our baby is going to die!’ I don’t know much about hospitals and procedures, but I did know that open heart surgery meant stopping the heart and putting Jamie on a heart-lung machine. That, to me, sounded like a really high risk procedure so all I could think was, we might lose Jamie. I felt awful and had the feeling my whole world had fallen apart. Luckily, we soon found out that the surgery was actually quite low risk and chances of everything going well were around 97%. After this devastating news, we were told that they wanted to do a heart catheter procedure to see what exactly was wrong with his heart as they weren’t sure they got all the information on the echo. Cancellation, cancellation, catheter They planned the procedure for Friday so we stayed in hospital for two more nights, but on Thursday evening we were told that the procedure was cancelled and rescheduled for Monday, so we could go home for a few days. On Sunday we got another phone call that it was cancelled again and rescheduled for the following Friday. We went back to the hospital on Thursday and he was first on the list for the catheter on Friday. When the time came to leave him behind in theatre I thought I was going to collapse. What an awful sight to see your little child struggling and fighting the anaesthetic! A few hours HeartLine Annual Review 2011


later we got a phone call that everything went well and we could go to the recovery room. Jamie was so upset when he woke up and didn’t see us, that he pulled out his cannula from pure frustration! Within a few hours after the op we were told we could go home and things went back to normal as soon as we stepped through the door. Less anxious On 19 October (my birthday, of all days) the hospital called me – they wanted to do open heart surgery on 25 October to try to open his blocked artery. We arrived at the hospital the day before and when they did Jamie’s blood tests, they placed a cannula in his arm as well. This was a godsend because they could put his anaesthetic straight into his bloodstream and he fell asleep within seconds without any struggle. Ian and I came out of the anaesthetic room really calm and I think we were less anxious whilst we had to wait as well because of this. Jamie went into theatre at 11am and around 6pm we got the phone call that he was taken to PICU and everything went well. The surgeon wanted to have a word with us to explain some things, which worried me. All I could think was, something must have gone wrong. Luckily nothing went wrong but he did explain they had to change the procedure because his aorta was in the way and it made the procedure too high risk. So instead they placed a BT shunt from his arm to his lung to let the blood vessels and veins grow over the next few months. Normal for a while After three days in intensive care and two more days on the ward without any complications, we were back home on 29 October. After a check up a few weeks later, and six weeks of lifting Jamie carefully, things went back to normal for a while. They told us they wanted to do another heart catheter within six months of his shunt operation and a full repair within a year. So in May this year, we finally got a letter through for his heart catheter. He had his second heart catheter on 24 June and they only checked if everything looked the way they expected, which it did. It was, again, really straightforward and we were back home the same day. Two weeks after his second catheter, we got a letter from the hospital, saying they want to do his full repair op soon. So now, all we can do is wait for a date for his next and most dreadful operation. It scares me to death to even think about what they are going to do to my little brave soldier, but unfortunately there isn’t an alternative so we have to get on with it.

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A different perspective It’s been less than a year ago since we discovered our healthy happy child wasn’t as healthy as we thought and it still feels as if it’s all a dream sometimes. When someone asks me about Jamie, it feels like I’m talking about something I just read in a magazine. On the other hand, it has put my life (and my family’s life) into such a different perspective. We appreciate little things much more and do more fun things and enjoy life. It just frustrates me that you sometimes have to go through so much heartache to realise how precious life is. Terms used Congenital: present at birth Pediatric doctor: a doctor specialising in children, a pediatrician A&E: accident and emergency Sats: short for saturation level. The amount of oxygen the blood is carrying. This is normally 98100% X-ray: a test using rays to see the more solid structures inside the body Consultant: senior doctor Echo: short for echocardiogram – an image of the heart created by using high frequency sound waves. Heart catheter: a cardiac catheter – a tube which is put into the heart via a vein. It is used to help diagnosis, by measuring pressures very accurately, or can treat a problem such as widening an artery, or closing a hole. Blocked artery: an artery is a blood vessel which carries blood away from the heart. Blockage is sometimes caused by a valve not being properly formed or missing altogether. This is sometimes called atresia. Cannula: a tube inserted into a blood vessel and kept in place so that it can be used several times without the need for new injections. PICU: Pediatric Intensive Care Unit. Aorta: the main blood vessel carrying oxygenated blood from the heart towards the body. BT shunt: a passage created to carry more blood to the lungs for oxygenation.

Children’s Surgical Heart Units Many HeartLine parents will have been anxiously following the Safe and Sustainable review of children’s heart surgery hospitals – but there will also be those who have recently become the parents of children with heart conditions and may want a brief round –up. This has been a hugely controversial issue – several parent groups have produced massive petitions to keep their current surgical unit open, there have been questions and debates in Parliament, rallies and marches. The best way of catching up with the current situation and the many issues that have been raised and are being considered is to look at the website http://www.specialisedservices.nhs.uk/ Briefly the stated aim of the review is to develop a national service that has: Better results in surgical centres with fewer deaths and complications following surgery Better, more accessible assessment services and follow up treatment delivered within regional and local networks Reduced waiting times and fewer cancelled operations Improved communication between parents and all of the services in the network that see their child Better training for surgeons and their teams to ensure the service is sustainable for the future A trained workforce of experts in the care and treatment of children and young people with congenital heart disease Surgical centres at the forefront of modern working practices and new technologies that are leaders in research and development A network of specialist centres collaborating in research and clinical development, encouraging the sharing of knowledge across the network … and many other important outcomes.

At the start of the review a set of standards were developed and 11 hospitals in England offering surgery reviewed by an expert panel to look at the hospitals which are currently placed to meet the standards. The Joint Committee of Primary Care Trusts – which has the responsibility of making the recommendation to the Department of Health – looked at the evidence produced by an expert panel set up to review the eleven surgical units in England , clinical groups, professional groups and associations, charities, parents, hospitals and patients. It then produced four options for a reduced number of hospitals which should continue with surgery. Of the hospitals nine were included in one or other of these options – one because surgery had recently ceased, and the other as it was considered that only two of the three units in London would be needed. These options were put out for consultation – meetings were held around the country and the public consultation has now closed. The Royal Brompton Hospital was not included in the options and has been granted a judicial review of the decision to exclude the hospital from the consultation – that is, a court will rule on the legality of the decision by the Joint Committee of Primary Care Trusts. Obviously which hospitals should cease surgery is highly controversial, and some of those families whose hospital does not appear in all of the four options feel threatened – they fear losing their local unit, meaning there would be increased travelling and further time away from their families when a child needs surgery, or some other specialist tests and treatment. In some cases young people would no longer be able to remain at the same hospital as they become adults. There are claims that there would be dangerous delays in getting children to emergency care. The loss of relationship with a surgical team, which may have treated your child for several years, is seen not only as reducing the quality of care the child will receive, but also the loss of emotional support parents have come to rely on.

Provision locally – a personal view Hazel Greig-Midlane writes: I have been involved in campaigning for improved treatment and facilities for our children since the start of this century. Although I have represented individual HeartLine members’ views (the Standards include many of these) HeartLine Trustees have agreed that we would keep members informed but we would not and could not represent a definitive set of views to the review.

diagnosed, require emergency treatment, and are more likely to need monitoring and transplant in the longer term, yet this very vulnerable group keep being ignored or overlooked – or maybe someone somewhere just thinks ‘congenital’ is a catch-all to describe childhood heart disease.

Children’s, not Congenital, Heart Services But there are one or two issues I would personally like to bring to your attention – and one particular bugbear is the use of the word ‘Congenital’ all over the review. It cannot be news to clinical experts and child health administrators that many children acquire heart problems, and that these are often poorly

The heading quotes below have been made reported by parents as being made by medical staff.

Because these children are not diagnosed before birth, they are in particular need of good local medical care to get them quickly the life-saving treatment they need.

‘The sats machine must be wrong’ When we have been told that concentrating surgery for children in a few centres will bring with it more local services, the

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Provision locally – continued response of many parents is absolute fear. They have experienced at first hand the ignorance of a GP, the lack of knowledge of the pediatrician, the poor equipment in a&e. ‘Babies with heart murmurs often pant like that’ But we must have good local services, because this is where a child’s life is often saved – by the skill of the prenatal sonographer, by the knowledgeable midwife or health visitor, by the GP who can refer to a specialist local pediatrician, the accuracy of the local pharmacy, the availability of a well equipped accident and emergency department. Without these services some children will die. The issue is very rarely how quickly can you get a child to a heart surgeon, but how quickly is the child’s condition recognised and referred to a pediatrician who can stabilise him or her. So a network for heart children should include a local hospital with children’s doctors and nurses who have had extra training from a paediatric cardiology centre, and telemedicine links with

a PCC. This would mean that as soon as a midwife, health visitor or GP had any doubt about a child’s cardiac health, he or she could be referred immediately, either for diagnosis and potentially for stabilising treatment, or referral back to the GP as heart healthy. ‘How long has your child had a congenital heart defect?’ And this network must recognise that much of the care of the child is by the parent in the home. Parents have responsibilities in recognising symptoms, accessing diagnoses, finding and administering unusual medicines, informing and passing on instruction to the child, other carers and educators, other clinicians and health care workers. The parents are not just the recipients of care services provided by the network – they need to be part of the network.

LEFT: Egg and spoon race from the HeartLine summer party at Wetlands 2011

RIGHT: Sack race from HeartLine summer party at Wetlands 2011

BELOW: Sibling PGL holiday 2011

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Gentle Adventures Aimee Georgeson writes: Keira, Jarvie and I set off from home at 8am and reached Jon and his 40’ ocean yacht at about 10am. We were introduced to the yacht and David, who was helping Jon out that day. We had a cup of coffee while we looked at the maps. Ocean maps are different to land maps, they mark the gradient of the bottom of the sea and the depth of water, rather than hills. A bit like an upside down map! We all got into waterproof trousers and jackets (big, not so trendy but warm and dry). We sailed out across to the Isle of Wight and had quite a bumpy ride due to strong winds and bouncy waves. It took us an hour to trust that the yacht would not tip us overboard, because we were riding at a very peculiar angle to the sea. Jon explained that the bottom of his yacht had a lead weight underneath several feet long which prevented us from tipping over. We anchored in a calm bay to eat a delicious lunch of cheese rolls, salmon and cream cheese and sliced veg. While we were below deck the anchor had dragged and almost bumped into our neighbours. Luckily David checked half way through his lunch and managed to move us to safety! We rode back to the coast smoothly even though the winds had reached over 30 knots. I experienced several full frontal (waves in the face) and Jon had to act quickly when he realised the main sail was ripped. We gathered the sail in

quickly and used the engine for the rest of the trip home. Once back we ended our afternoon with coffee and chocolate biscuits. We teased Jon and David a bit about our ‘gentle adventure’ as it had been anything but gentle! Jon said he’d never had such strong winds, a dragged anchor and a ripped sail in many years of sailing with families. We wouldn’t have had it any other way, we had a fantastic day, the best day out we’ve ever had as a family. We would like to thank you all at HeartLine not only for giving us a fab day out but also for being there when families need you!

Wetsuits... We are very pleased to be able to offer HeartLine members free wetsuits for their children with heart conditions. The next order will be going in very soon. If you haven’t done so already and wish to have a wetsuit please call HeartLine on 033 00 22 44 66 or email admin@heartline.org.uk


Approx Age

Top of zip to crotch



0-6 months

10” / 25cm

18” / 46cm


6-12 months

11” / 28cm

20” / 51cm

We will need


12-18 months

12” / 30cm

20” / 51cm


18-24 months

14” / 36cm

23” / 58cm


2-3 years

15” / 38cm

24” / 61cm


3-4 years

16” / 41cm

24” / 61cm


Approx Age


Neck to Crotch

XXXXS (4XS) 2-3 years

22” / 55cm

15” / 38.5cm

XXXS (3XS) 3-4 years

22” / 55cm

17” / 43cm


4-5 years

23” / 57cm

17” / 43cm


6-7 years

24” / 62cm

18” / 45.5cm


7-8 years

26” / 66cm

19” / 46.5cm


9-10 years

27” / 70cm

20” / 51cm

Your full name and address

Your heart child’s name

Colour preference from pink, blue, green or red

Please let us know the size required from the tables on the right – ages are for guide only, so please check your child’s measurements before ordering:


10-11 years

29” / 74cm

21” / 53cm


11-12 years

31” / 79cm

21.5” / 55cm

HeartLine Annual Review 2011


A very hard experience JD’s mum recounts some of the problems her eight year old son encountered: We had less than twenty-four hours notice to get to the hospital for JD’s third lot of open heart surgery, the original date we had been given had been cancelled and they felt it was better to squeeze him in sooner rather than later. Snow We had a nightmare journey to the hospital, all our trains has been cancelled due to the heavy snow fall so we had to drive into London through blizzardy conditions. What would have normally been a straight forward hour train journey, took four long hours by car, stuck in traffic slowed by the heavy snow fall. We finally arrived at the hospital, cold, hungry and stressed and made our way to the cardiac ward like we had been told to do earlier that day. Not prepared Once on the ward we were surprised to find that no one actually knew why we were there, they had no knowledge of JD being admitted that afternoon or his surgery the following day – they were not prepared for our arrival at all. We were left waiting for what felt like hours while various nurses and other hospital staff tried to find out what was going on and where we were meant to be. Although it was stressful the hospital staff did all they could to help. No room Once they realised that we were in the right place, we were informed that we could use the patient hotel so that we could all stay together the night before Little Man’s surgery, but on arriving at the hotel we were quite rudely sent away as they were fully booked. So once again we trekked back to the ward, now not knowing where we would be spending the night, again it was utter chaos and no one was quite sure what to do with us.We felt uncomfortable and out of place, we felt like we were not welcome, it was a bit like being an unwelcome visitor. Stuck here On top of that trying we were to reassure an already terrified eight year old boy, who quite obviously did not want to be there either. Trying to remain calm and keep my own fears in check was just too much. I just wanted to go home by this point, but with the awful weather and the fact it was by now quite late, I knew one way or another we were stuck here. Finally it was agreed we would spend the night on the ward, but because of the “only one parent can sleep by a bed” rule, we had to be separated and JD’s Daddy was sent to sleep somewhere else alone while I stayed with JD: much to JD’s disappointment. Awful night It was an awful night. JD was terrified and refused to stay on the ward, so between the hours of 2am and 8am we sat outside the ward in a corridor. It was the only place I could keep my Little Man calm. As well as not wanting to upset JD I was also worried he would wake some of the other

18 HeartLine Annual Review 2011

children that were also staying on the ward. In the morning, once again no one was quite sure what was going on or when JD would be going to theatre. He had been on nil by mouth since midnight just in case he was going down early, but by 10am and still no one had been up to see him it was quite apparent that he wasn’t going down to theatre early. Finally at about 11am we got to speak to someone who knew what was going on. It was agreed that JD needed a pre-med before going down as he was already quite irate and getting himself in a state. Fear and anger Three lots of pre-med ended up spat at the anaesthetist and in the end an inconsolable JD was taken down without it. Putting him to sleep was the most traumatic experience to date. He has been put to sleep for various ops and medical procedures about fifteen other times in the past, but none were quite as traumatic as this one: he fought, kicked and screamed for help for over forty-five minutes before they were finally able to get him off to sleep. Both his Daddy and I were devastated. It is hard enough putting your child through this as it is, but to witness our sweet precious little boy fight with so much fear and anger, was just awful. We were in bits by the time we had to leave him – we just felt so helpless. Some hours later, I am not sure exactly how long it was – the rest of the day passed in a tear-stained haze – we got the call to say that he was out of theatre and on his way to cardiac intensive care. Rest A while later we were shown in to see him: he was settled for the first time in days, resting so peacefully, wired up to the ventilator and various other machines that were allowing his body to rest. Later that evening, as the doctors were stood over him

discussing whether to wake him up the following day, he miraculously sat up, opened his eyes and tried to speak. The doctors had a re-think and decided to let him wake up fully now and extubate him, with the intention of resedating him if he became too distressed. JD was quite settled through the night and managed to stay off the ventilator and, by the early hours of the morning, was wide awake and demanding a cup of tea ... That’s My Boy!! I’m not staying here! He made it quite clear to every member of hospital staff that went near him that he was not going to be staying. Less than 24 hours after having open heart surgery, my little boy was awake, off the ventilator, had his drains taken out, had left intensive care to go to the ward and even managed to sit up, get out of bed and have a little walk as well, but best of all he even managed a smile too. His fighting spirit and determination were amazing. I was (and still am) so proud of him. Home after three days! He went from strength to strength and he had already made his mind up that he wanted to go home and amazingly enough three days after having open heart surgery we were told that there was nothing they were doing for him there that we couldn’t do at home, so he was able to come home. JD was extremely happy about this. I was a little nervous taking him so soon, but knew he would recover quicker in his own home. He had been so determined to get home right from the start, who was I to stand in his way – he knew his own mind. Syringes We were sent home with bags full of meds and a big list of what meds he needed to take and how much, how often etc. It was a lot to take in as there was a lot of meds, but I knew that once we got home, I would soon get the hang of

Pharmacists are only paid to provide syringes when liquid doses are not multiples of 5mls. But we know that syringes are often needed to give medicines because

it, so wasn’t too bothered. It wasn’t until we got home that I realised we had only been given one syringe in each size and within a few days the numbers on the syringes were already beginning to rub off and fade. I rang round, doctors, hospitals, community nurses and pharmacists all of who were about as helpful as a chocolate teapot. I wasn’t quite sure what I was going to, so tried my luck asking for help on the HeartLine forums. The next few days our postman was kept very busy as boxes and packages containing various sized syringes were sent to us. I am ever so grateful for this and seriously do not know what we would of done without the help of the HeartLine community during that time. It turns out that because JD is now older it is not standard practise to use a syringe for his medication, which is all fare and well for meds that have a standard 5ml or 10ml dosage, but a lot of his heart meds and some of his stronger pain relief meds were only very small doses, which are impossible to measure out accurately on a 5ml medicine spoon. I think someone needs to seriously review this policy!

try to taste from a spoon – a syringe can be a definite no-no, a spoon isn’t. More acceptable to the child – less taste if miss the front of the tongue Syringes are what a child is used to while in hospital

Accuracy – exact measure easy to give Sterile where immunity is compromised Less waste – easy to spill from a spoon Flexible – they can be made up as exact dosages and sent to school with the child for example Can be given where other children may cause spills or

Medicines can be given in more concentrated solutions, so allowing child more stomach room for food! Children like to use them themselves, and can self administer much more easily than from a spoon Lack of free syringes seriously undermines the ability of parents to provide the best care.

HeartLine Annual Review 2011


Heart Children: A practical handbook for parents... For the past twenty-five years Heart Children has guided parents and families through the heart condition that children may be born with or acquire, the treatments available, and how to deal with the many medical and social problems they may have to face. This fourth edition of the book has been written by parents, nurses, doctors and counsellors, and has attempted to keep pace with the many innovations in the field of pediatric cardiology, which are now preserving the lives that would have been lost a short generation ago. As well as answering many questions such as ‘When can an unmarried father consent to his child’s treatment?’, it distils much of the practical knowledge developed in the 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 very least empathy. How to obtain your copy Send a cheque made payable to HeartLine Association with a clear delivery address to 32 Little Heath London SE7 8HU Members of HeartLine Association £6 Multiple copies £7 (includes postage) Single copy £13 (includes postage) About this Book The discovery that your child has a heart defect can be a very scary experience. It is at this time, following diagnosis, that parents experience feelings of shock, panic and stomach-churning anxiety. The alarming high-tech medical world into which the family is catapulted often causes further fright. Although doctors and nurses do their best to describe matters, heart conditions are often so complicated and the surgical procedures so technical, that parents, in the first shock of diagnosis, often go away with an incomplete or erroneous picture of what is to happen. Of course ignorance breeds fear as unanswered questions emerge. Parents have enough to cope with at this time without taking on needless anxiety. Many other questions arise as your child goes through the process of hospitalisation, tests and surgery, so the second aim of the book is to provide a little comfort here, in giving some gentle explanations and sharing experiences.

20 HeartLine Annual Review 2011

Finally, the advancing techniques of pediatric cardiology have enabled many children to survive who would not have done so even 30 years ago. So now, many parents are encountering for the first time the joyful problems of dealing with schooling, physical ability, suitable careers, holidays (flying and travel abroad), driving, insurance, genetic counselling, contraception, marriage, mortgages and a thousand and one situations which are hardly noticed by 'ordinary families'. These produce questions for the family of a child with a heart problem and many of these topics are addressed in these pages. Summary of Contents Understanding the heart, prenatal diagnosis, diagnostic tests, the most common heart defects and arrhythmias, feeding, medicines, catheter procedures, open heart surgery, pacemakers and other devices, communicating, consenting, concerns and complaints, second opinions, in hospital, at home, childcare, nurseries and school, state benefits and support services, supporting bereaved families, sources of help. Foreign language versions of Heart Children handbook We have published the third edition of Heart Children in seven languages: Arabic, Hindi, Urdu, Gujarati, Punjabi, Bengali and Italian on the internet at our dedicated website. The translations are a valuable asset to cardiologists and cardiac nurses and also to general practitioners and community nurses who are responsible for communicating this complex subject to parents from minority groups. This is of tremendous benefit to parents who do not speak English and to parents who speak English as a second language. Also from HeartLine Baby Bill – the bear cub’s heart needs mending Growly Bill – He’s growing up to be a big bear who sometimes needs an ECG Dental Care for Children with Heart Conditions – endocarditis is rare, but children with heart defects are particularly vulnerable, this booklet will help you protect your child from tooth decay, abscesses and gum disease My Heart Child Won’t Feed – sadly many children with heart conditions just don’t see eating as an activity they want to engage in. This short information sheet offers help and sympathy.

HeartLine’s Board of Trustees: Hazel Greig-Midlane, Vice Chair Darren Pickard, Treasurer Louise Brazier

Support – to give and receive One of the main ways in which HeartLine supports families is by putting them in touch with others who have been in a similar situation – through the Forums on our website, or by emailing the kind of contact you need – perhaps someone familiar with a particular disability, eating problems, nursery or school difficulties for example. Then there is our number – 0 33 00 22 44 66 – leave a message if we can’t pick it up straight away, or contact one of our core support group. Forums: go to www.heartline.org.uk/forum/message.html to discuss all aspects of life with a heart child, to give support and receive it, to find information and fellow feeling, to have the occasional waffle and the odd rant LIZ AND KEITH COLLINS: Keith can offer Dad to Dad support, and Liz is especially knowledgeable about feeding strategies, Fallot’s Tetralogy, and teenagers with a heart condition. MARGARET HORSTEAD: Margaret offers support to all families, and especially those with children with Di George Syndrome KATE JENNER: Kate offers to support bereaved parents VAL THUBBRON: Val’s son is treated at Great Ormond Street, so can support those whose children are treated there. She is also a Senior Moderator on the HeartLine forums, so can sort out any problems in getting access. JAN LYONS: Jan knows the Brompton hospital well and is well placed to support families with children treated there. JAN KINGSLEY: has offered prenatal support for many years. Please make sure that families know about us and help us to support each other To join HeartLine Association, complete the form on the website

www.heartline.org.uk Or contact us and ask for a membership form Telephone 033 00 22 44 66 Email: admin@heartline.org.uk Post: 32 Little Heath, London, SE7 8HU

HeartLine offers help to ALL children with heart conditions and their families – whether the condition is congenital or acquired, whether surgery is needed or not, whether it is a short term problem, or a lifelong disability, whether the child is treated at a hospital in Scotland or England or Wales or Ireland.

Website: www.heartline.org.uk

HeartLine can be reached by telephone 033 00 22 44 66 Email: admin@heartline.org.uk Post: 32 Little Heath London SE7 8HU