Heartline 2011 Annual Review

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HeartLine was not immune to the financial crisis which is affecting so many charities. The veryhard 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 involunteers to deliver the service.

Several experienced Trustees had to stand down and our Chair of thirteen years also had toleave at the April 2010 AGM. Closing down our office meant losing our office manager andfundraiser 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 11will show that we managed to get through the year in a better financial position, but with the sadloss 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 ofthe configuration of children’s heart surgery units. Proposed reduction in the number of unitsmeans that some parents may be facing a future without the comfort and security of the teamthat has always treated their child. Inevitably this created competitive PR between units andparents, and between groups of our members.

I have been a HeartLine member for 28 years, and became a Trustee in the hope that I couldcontribute 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 whoseknowledge 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

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After an easy and stress free pregnancy she decided shewould like a bit of a fuss on her arrival and got stuck onher way out. Weighing a healthy 8lb 9oz with apgar scoresof 9 then 10, we were in awe of our gorgeous first born.

Never awakeIt wasn’t until we noticed she was only breast feeding for afew minutes at a time that we suspected something waswrong. The midwives said she was fine after checking herlatch and seeing that she wouldn’t drink from a bottle –therefore full up. We had to stay on the ward for three daysdue to my c-section. I noticed in this time that my babyseemed to be the only one never awake but as a first timemum I assumed this made me the lucky one!

Just before we were discharged on the third day, apediatrician heard murmurs in Amelia’s heart. A few otherdoctors filled my little cubicle, all surrounding my nownaked baby on the bed checking her legs, her tummy andall having a good listen through their stethoscopes. Evenat this point, I hate to say it but I felt everything was ok. Ihad grown up with an innocent murmur, a whooshingnoise in my heart with no cause or problems and I thoughtshe may have the same thing.

She was fineI was hurrying the doctors who were looking quiteperplexed by this point, one took me aside and said ‘Thereis a murmur in your baby’s heart that we need to check’which confirmed my suspicions of her having our ‘familymurmur’. They made us wheel her down to x-ray in herlittle cot, she was such a lump of a baby – so healthylooking. After the x-ray we were sent to the neonatal unit,our huge baby laying there amongst the smallest mostfragile babies I had ever seen seemed to cement in mymind even more that she was fine.

A few hours later, after much begging pleading and almostarguing we managed to get discharged with anappointment for Amelia to see a specialist who would becoming from another hospital in a few weeks time. I was alittle worried then but she had been thoroughly checkedout before we had left so surely they wouldn’t let her go ifsomething was wrong.

Panted – normal for murmurs!We enjoyed six blissful weeks at home adjusting tosleepless nights and showing her off to family. Her cardiacappointment barely even entered my mind, my babylooked well, breastfeeding was a doddle I had no ideawhat other mums complained about. She just slept, had afeed for five minutes then slept again! I remember thehealth visitor visiting our house and we mentioned thatAmelia panted; she told me that babies with murmurs dopant sometimes which I thought was strange. My two yearold niece even imitated Amelia’s panting when she met herit was that noticeable.

Tissues on the tableThe day of her cardiac appointment came and I felt a

nagging feeling in the pit of my stomach. It didn’t go allday, as she slept in my arms in the waiting room, as shescreamed so much as they scanned her and even more sowhen I watched the consultant disappear and not comeback for a very long time. When he returned he wasfollowed by a petite, kind faced nurse who waved usthrough a set of double doors into a room whichresembled a room set in Ikea with flowers on the sides andtissues on the table. Tissues on the table….

‘I am afraid Amelia has Tetralogy of Fallot; this means shewill 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 andI was now wishing I had paid attention to. He wasscribbling all over the diagram, destroying my baby’s heart,removing one part, adding in another, scribbling out ahuge section in the middle, it was a mess. I just cried, withmy half naked innocent baby scrunched up on my lap, Icried.

Wonderfully supportiveThe days and weeks following her diagnosis were dark.We were visited weekly by the neonatal nurses who wouldcheck her feeding, oxygen saturations and breathing. Theywere wonderfully supportive and I would live for their visitsanxious for them to tell me my baby was ok. I spent timereading about Tetralogy of Fallot, the hypoxic spells (tetspells), the defects and how they would fix them. Everywebsite seemed so positive that with the new tetralogyrepair surgery the children affected would grow up happy,able and healthy.

We were initially told Amelia would have surgery at threemonths, but she reached three months remaining fairlywell. Feeding was hard work; I gave up breastfeeding as Icouldn’t stand not knowing if she had fed enough andchanged to formula drinking – tiny 60ml bottles. She waschanged quite quickly to calorie packed formula whichhelped her keep gaining weight. She had her first hypoxicspell around this time.

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 wavetwo years ago.

HeartLine Annual Review 2011 � 1

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DownhillShe went downhill fromhere, she vomited all thetime. The opposite toreflux we would keep herlaying down after a feed inhope it would stay down,the doctors thought herbody couldn’t cope withthe fluid and her enlargedheart was pressing onto her stomach causing her to vomit.I can’t explain what it feels like to spend an hour feeding ababy 60-90mls of formula for it all to come back out justmoments later, when you know just how important everysingle drop of that milk was.

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

Heart surgery soonerAmelia began to suffer hypoxic spells more regularly; wewere often in hospital waiting for new medications to beadministered to try to prevent the spells. At six monthsthey decided she needed angioplasty, an operation wherethey enter through a blood vessel in the groin, go into theheart and stretch the pulmonary artery hopefully allowingenough blood to reach her lungs. Amelia ended up withjust a cardiac catheter not angioplasty as once they sawher heart using the camera they decided she needed theopen heart surgery sooner rather than later.

She didn’t recover very well from the cardiac catheter; shewas so blue when she came round from the generalanaesthetic. Her SATs were sitting so low and at one pointdropped to 30. Surprisingly the hospital nurse didn’t domuch about this; I was sat on a chair with my blue baby inmy arms holding an oxygen mask on her face with a SATsmonitor on her toe constantly bleeping as her oxygenlevels dropped. I was petrified. When the consultant camearound to discharge us he read her notes and saw herbreathing so we were sent to the cardiac ward where ateam of medical staff were waiting for us. After trying toprep her for surgery they chose to let her recover in a quietspace with us. This worked!

Glad to have a dateThe next evening we were discharged with the promise ofher open heart surgery being within four weeks. Myfeelings about this always surprise people who have notexperienced a heart child, I was glad we had a date forsurgery. Yes it was a scary thing but she was going to bewell afterwards. We would be able to walk around shopswithout people telling me she looked cold, or staringbecause in all honesty sometimes she just didn’t look verywell at all.

Her open heart surgery would be at Great Ormond Street,our chosen hospital. I had read about other people’sexperiences of the hospital through my HeartLinemembership and felt confident they were right for Amelia.On the day we went there Amelia was calm all morning butan emergency case had gone before us so we were leftwaiting until 2pm; she was distressed and hungry by thenso they gave her some meds to let her sleep. I rememberhanding her over in a very cold room, almost morgue like,

with people covered up somuch all I could see wereslits of eyes peeping overthe tops of masks andpeering from under hats.

ShockedAmelia’s operation tooknearly six hours; webusied ourselves in asmall hospital cafeteria looking around at all of thechildren, wondering what battles they were fighting. Whenwe were finally able to see Amelia after her operation Iwas totally shocked and almost passed out right there nextto her bed in CICU!

Her recovery was tough at first, she has always been adetermined little girl and she had been given the maximumamount of morphine and was still trying to pull her drainsout – this is whilst on life support! She ended up wrappedup in a sheet and her arms in splints to protect her fromherself. She took a while to come off life support becauseof the amount of drugs they ended up giving her. It wasquite scary watching them take her breathing tube out andher chest not rising, they always ended up bagging herand putting her back on life support. After a day of it thenurse refused to try anymore so they closed off the wardand tried again, I don’t think they realised we could seethrough two sets of windows from the corridor straight toher bed and watched everything that was going on. Whenwe went back she only had an oxygen mask on and wasdoing well.

StridorShe was discharged just four days after her open heartsurgery. That night we watched her splashing away in thebath, shocked at how much she had been through andhow well she was. Unfortunately she developed post-operative stridor, a swollen breathing tube, and wasreadmitted for another couple of days whilst she hadsteroids.

2 � HeartLine Annual Review 2011

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She will need further operations; we know that herpulmonary artery/valve is severely narrowed again just ayear after her open heart. Her coronary anomalies make ittoo dangerous to remove her valve so she will end up witha shunt which will need to be replaced throughout her lifetime. We remain very hopeful that she will reach her teensbefore this is needed and who knows what medicalmarvels will have happened by then.

Capable of anythingAmelia is wonderful, a real advocate that heart defectsdon’t mean a life of hardship. She attends a dance classand regularly goes swimming at only two. I don’t knowhow she will feel about having a heart defect when she isolder but I hope she will grow up knowing that she iscapable of anything, she has already fought the hardestfight for life and won.

Terms used Tetralogy of Fallot: four heart defects – a hole betweenthe left and right ventricles with an overriding aorta(picking up blue blood from the right ventricle as well asred from the left), pulmonary stenosis (a narrowing in thepulmonary valve), and a thickened right ventricle.

ASD: atrial septal defect, a hole between the right and leftatrium

PDA: patent ductus arteriosus, a blood vessel which ispart of the fetus’ circulation and should close at or shortlyafter birth

Coronary anomalies: defects in the coronary arterieswhich should provide oxygen rich blood to the heart.

Apgar: check of new born babies – the highest score is10 based on colour of skin, pulse rate, reaction, activity,and respiration

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

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

Open heart surgery: the heart is stopped while surgery isperformed on it

Oxygen saturations: amount of oxygen in the blood

Hypoxic: lack of oxygen

Pulmonary artery: the blood vessel that carries blue bloodfrom the heart to the lungs

Cardiac catheter: a fine tube which can be passedthrough a vein into the heart where it can used fordiagnosis – measure pressures, injecting dye, takingsamples – or treatment such as, inserting devices orwidening a valve.

SATs: short for oxygen saturation: a measure of theamount of oxygen in the blood

CICU: children’s intensive care unit

Morphine: powerful painkiller

Steroids: drugs which reduce swelling

Pulmonary valve: the valve which controls blood flowbetween the right ventricle of the heart and thepulmonary artery


Prenatal Support Jan Kingsley, HeartLine’s Prenatal Support parent writes:Alex’s heart problem (Transposition of the great arteries complex) was diagnosed whenI was about 20 weeks into my pregnancy. This was the first time this particular conditionhad been detected before birth in the UK and Europe and led me to start the HeartlinePrenatal 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 tobelieve he’s just celebrated his 21st birthday.

If you know of any parents who have had their baby’s heart problem diagnosed duringpregnancy please let them know that HeartLine can offer help, support and advice.

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Fundraising for HeartLine

Theo Walker FundLucy Walker wrote: Theo’s daddy and his friends ran thirtymiles coast to coast in Menorca. It was tough andchallenging but they all did it with enthusiasm and energywhich got them through it all – it took them 6.5 hoursstarting at 3.15 in the morning!

They have raised an incredible amount of money –£10,000 – with half of this going to HeartLine and theother half going to Little Hearts Matter.uk.virginmoneygiving.com/team/coast-to-coast

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

Ed – to read Lucy’s life-enhancing story seewww.theowalkerfund.com

Ride the Dream ➨In an amazing nine days Darren Gill rode his bike fromLands End to John O’Groats for HeartLine.

Darren’s nephew Lewis was born with a serious heartproblem and he wrote that HeartLine has given Lewis andhis family fantastic support since he was born.

You can read the story and show your appreciation for hisefforts at http://www.justgiving.com/Darren-Gill

Any support gratefully receivedYou can see where HeartLine wants/needs to help familiesby 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 withfundraising, look at your calendar for a regularreminder!

� The 100 club – enter for adraw every month for ashare of the monthly £2donations. There’s a formon the website or contactus

� Want to jump out of aplane? – Go on then –contact HeartLine orthere’s a form on thewebsite to participate inskydiving

� Organise a local event –whatever you would like todo, let us know and we’llprovide you with posters

� Raising awareness is also very important for us – couldyou donate a Heart Children book to your local library?Help out at events around the country? Give a talk toyour school or social club?

Contact HeartLine through our website,by emailing [email protected],

by calling 033 00 22 44 66, or by writing toHeartLine, 32 Little Heath, London, SE7 8HU

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Harry was born five weeks early and, at a day old, wewere told he had a heart defect: pulmonary atresia, vsdand mapcas, and vater syndrome. He has had two BTshunts, one at four days old and another at one year old.

Very blueLast year we noticed that he was starting to get very tiredand his oxygen saturations were getting lower – they werelooking at around 72 when resting and going into 50’swhen active, and he was starting to look very blue. So itwas decided that he would need further surgery – theRastelli procedure which we were told will make his heartas normal as possible, and give him higher sats –somewhere in the high 90’s.

We were told the risks involved in the operation and wehad to sign the consent for surgery. My hand was shakingwhile signing it but I knew it had to be done. Then on 13June 2010, the day before the op, we had to take Harry forblood tests etc. We were allowed home and had to comeback next day – we were given nil by mouth instructions.

Laughing at the ceilingNext day we saw the anaesthetist and Harry had his pre-med, which we think made him start hallucinating as hewas laughing at the ceiling and laughing at anything andeverything like he was drunk! It was such a scary time buthe did really make us laugh.

Harry went to theatre at one o’clock. It never gets anyeasier handing them over at the theatre. I gave Harry a bigkiss and Paul went in as they put him to sleep. I stayedoutside with the nurse from the ward and a few secondslater Paul came out. We did our usual walk around thehospital and went to the canteen for some lunch. Time justseemed to stand still until, at 8.30, we were told we couldgo up to PICU and see Harry.

Really poorlyI was just so pleased the op was over and we could seehim but as we got there we were told that we had to wait inthe parents’ room. I just knew something was wrong, thensome other parents came in and we started talking tothem and they said they had been told to leave theintensive care unit as a child was really poorly and therewere a lot of doctors and nurses running around. Little didI know it was my boy in there that was causing all this.

Then a nurse came out and told us Harry had had to beresuscitated as he had gone into a cardiac arrest. It took awhile for the surgeon to come at talk to us as the nursessaid they would not leave him until they were happy hewas stable.

Some brain damage?When the surgeon came out to talk to us he said they hadhad to open his chest and massage his heart and had toshock him. The arrest lasted for five minutes. He said hethought he was ok but could not be sure and that therecould 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. Ijust wanted to see him. The nurses took us through aboutan hour later. His chest was still open but we could notsee much, there were so many tubes wires going into him,and he was also on an external pacemaker as his heartwas not in rhythm. He kept getting high temps and had tobe cooled right down, so was placed on a special coolingblanket.

NoddingAs a few days went by he seemed to be responding to usas we talked to him. He was still on the ventilator and veryheavily sedated but he was nodding when we were askinghim questions and the doctor said it was a good sign thathe was responding to us.

Harry seemed to have good and bad days and when itwas a bad day it really got us down. The doctors andnurses who were looking after him were lovely. Theyhelped us out too for support. After two weeks of being onthe ventilator he was making some breaths on his own andhe went on to cpap to give him support with his breathing,but was doing it on his own.

A step backThen they took breathing tube out to see if he could copewithout it and he did, but seemed to be really strugglingand we could see it was tiring him out. The next day thephysio came in to suction his chest and his sats just

Harry’s Rastelli Amanda writes: I last wrote in the HeartLine magazine in 2009 about my son Harry and I justwanted to update on how he is doing.


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dropped and dropped and they got to 47 and docs rushedin to put him back on the ventilator. It was like a step backbut we knew it was for the best for him. The doctor cameand talked to us and we were told they would try again in afew days to take him off the ventilator after a rest, and if hedid not manage coming off it again they would maybe thinkof doing a tracheostomy. I really did not want this, but if hehad to have it and it was the best option for him so be it.

Mam’s kneeThe next time he came off the vent was different – hecoped much better. He tried to talk to us, but his voice wasvery weak and we could not hear what he was trying tosay. So I put my ear to his mouth and he whispered ‘Mam’sknee’. I was sobbing. We then knew there were noproblems from the arrest and I got my first cuddle in threeweeks.

Things were looking up, but they noticed his leg was veryswollen and we found out he had a blood clot in his leg.He would need daily injections for the next three to sixmonths to clear it. A few days went by and he was gettingbetter and better. The chest drains and pacemaker hadgone. He was then transferred from PICU to the ward.Yeah! Closer to home, I thought. The nurses showed mehow to do the injections in his leg for when we got home,rather than having to come into hospital everyday.

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

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

lost more andmore weight.

Happybrave boyYes, it’s been atough year butthe ng tube isout, he has puton weight andhas startednursery, whichhe loves, andhas made lotsof new friendswho all fussover him andwant to lookafter him.

Even thoughhis heartfunction is notgreat he seemsto be managingit well with sats now in the high 90’s. They have neverbeen that high before and I still can’t get over them beinglike that. His colour is so much better. He looks so welland nothing gets him down. He is a very happy brave boyand we all, Mammy, Daddy and big brothers Kieran andJake, love him lots.

Terms usedPulmonary atresia: the pulmonary valve is blocked ormissing

VSD: ventricular septal defect – a hole between the leftand right ventricles, the pumping chambers of the heart

MAPCAS: major aortopulmonary collaterals – these areblood vesels that have grown to carry blood to the lungsfrom the heart, to compensate for the pulmonary atresia

Vater Syndrome: a collection of three or more of thefollowing have defects in a baby: vertebrae (spine), anusand rectum, heart, trachea oesophagus, radius, andkidney

BT shunts: making connections between arteries to thearms and the lungs

Oxygen saturations: the amount of oxygen in the blood

Rastelli: a surgical procedure which involves fitting aconduit – a tube – containing a valve between the rightventricle and the pulmonary artery

PICU: Paediatric Intensive Care Unit

Resuscitated: revived

Cardiac arrest: heart stops beating

Cpap: constant positive airway presssure – a way ofkeeping the small air spaces open

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

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


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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 thelongest word in the Spanish language. It means`extraordinary’.

Psychologically, 22 is the easiest number to recognize bythe human brain due to its curved shape.

A “Catch 22” situation is one that; no matter which way yougo, there is an undesired and negative result or outcome.

22cm is the length of the scar that will be forever on mychest, and 22 is the number of days I spent on life support.

I like who it makes meIt would be much easier if I was writing this at the age of22 as it would add great comedy value and witty standingto what I’m about to say but sadly I’m not and I can’t; I’monly at the meek age of 17. God doesn’t want this article toflow properly and couldn’t help me out by shortening thelength of my scar, darn you Lord! You’d think if I wasaddressing God I’d be asking for the removal of my scarand the reasons alongside it – but I like my scar. I like myheart condition. I like who it makes me. Of course I don’thigh five passing hospital patients at the genius luck ofhaving a life-long medical issue. But I don’t hate the worldfor how it made me.

For as long as I can remember my heart has been a hot topicand 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 boreyou with its details but in summary my heart is plumbeddifferently 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 acommon Joe – and who the hell is Joe anyway?)

Poked and proddedI had an operation at a very young age to correct whatMother Nature had failed at and it meant I would be onmedication for the remainder of my years and require regularcheckups at the hospital – for years I travelled back and forthon the dreaded British Rail networks to see doctors andconsultants and specialists. I’ve been poked and prodded

and forced to cough and“breathe in now for meplease”. I’ve had dreadedMRI scans where youfeel more trapped thanChilean miners or fitnesstests that were clearlydevised by a sick healthfreak to make you rununattractively on atreadmill just to provehow unfit you actuallyare! I’ve had moresurgical procedures thanKatie Price.

Yet I still love how I wasborn and who it made me, my scar is my life, my heart isobviously my life; without it I wouldn’t be here (stating theobvious) but I mean it – my heart works: it beats just likeyours, it works and that’s all I care about. It’s given me 17years of non stop entertainment and I will never let it stopme, I live my life just like the rest of you.

Don’t feel sorry for meMy heart condition has made me appreciate the life I lead,the people I know, the places I go (starting to sound like aTakeThat song). People try to wrap me up in cotton wool,protect me from the big bad world because Em’s poorheart won’t take it: don’t feel sorry for me. Feel sorry forthe children still fighting for a life I’m already living or thefact that the economy and the government are headingdown a public toilet; or that you might die in 2012 (veryunlikely, I have a holiday booked in 2013).

The point of this teenage rant is that as I begin to age, (it’sall downhill from here!) and experience the transition toadult care, I feel that I’ve had a superextraordinarisimo lifeso far (see what I did there) not in spite of my heartcondition but almost because of it.

A great lifeI have a great life to look forward to; and my 22cm scar willbe 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 anextract from that time.

4 February 1994 – The Bad News …. back I went to theconsultant’s clinic where another doctor said he thoughtshe had RSV. He watched her feed and said if she wasworse the next day to come back. We got in the car andshe was promptly sick again – I burst into tears. She wasabout fourteen weeks old by now.

Sats monitor not workingThe next day she looked just awful. She was grey andstruggling for breath. It sounded like she was drowning.(The cardiologist thinks she’d had a heart attack during thenight.) We rushed her back to the ward where they put heron a sats monitor and did some tests for RSV. The nursecommented that the sats machine wasn’t working properlybecause the oxygen levels were 100% and her heart ratewas 200 (and that couldn’t be right??). We went for a chestx-ray and when we got back they put her on anothermonitor.

Problem with her heartWithin ten minutes of us getting back from x-ray all hellbroke loose. The film showed that her heart was soenlarged that it was collapsing her left lung. And the newmonitor showed her heart rate was still 200. Thepaediatrician came to tell us that she had a problem withher heart, possibly a virus, and she would need a scan. Atthis point I just shut off. I think, they were asking me if Ineeded to know anything but I just said ‘No, its fine’!! Evenwhen they talked about going to the Children’s Hospital(Birmingham) it just didn’t register with me. They said shecouldn’t go for the scan for a while, so I left her with herdad and went to collect the boys from school and nursery.When I got back home, he was on the phone. Theambulance had arrived to take her so he had to go; he wasexpecting to have the scan and come back.

DenialI truly regret leaving her with Gary that day. I was incomplete denial of the seriousness of the situation I think. Idon’t regret it because he wasn’t up to the job – he wasand is more than up to the job. It’s just that I wasn’t therefor him or for Emily at possibly the worst moment ...

Well when he got to Birmingham Children’s Hospital it wasa different story. He says that when the doors opened a seaof people greeted him, a full PICU team, who took Emilyfrom him. Even before the echo they said that from the ECGthey could tell that she either had a serious congenitaldefect or a virus and either way they weren’t sure they coulddo anything for her. They wanted me there immediately.

Gary doesn’t speak about how he felt at that point but Iknow he was badly shocked, close to breaking down Ithink. I heard it in his voice. It must have been a dreadfulcall to make as well as to receive.

Two precious minutesYou can imagine how I felt; they were fifty miles away. Mydad drove me and I thought it was the worst hour of my life(little did I know). She’d gone into cardiogenic shock andwhen I arrived they had ventilated her and were basicallywaiting for me to say goodbye. So I had two preciousminutes with her before they went to catheter and thenhopefully to surgery. After a couple of hours they came tosay that she had Anomalous Left Coronary Artery fromPulmonary 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 thatshe’d get through. I vaguely remember someone bringingus tea and explaining about the defect but apart from thatthe night is a complete blur.

Terms usedRSV: respiratory syncytial virus – a virus which cancause bronchiolitis

Sats monitor: a monitor of the amount of oxygensaturation in the blood

Cardiogenic shock: a state in which the heart has beendamaged so much that it is unable to supply enoughblood to the organs of the body.

Catheter: a long, fine plastic tube. A cardiac cathetercan be passed through a vein or artery into the heartwhere it can be used to diagnose or correct problems.

Anomalous Left Coronary Artery from Pulmonary Artery:the coronary artery which should carry oxygen-richblood from the aorta to the left side of the heart, isconnected to the pulmonary artery. This means that theleft heart receives oxygen-poor blood and as a resultstarts to fail.

Bronchiolitis: a respiratory infection which causes thelittle sacs in the lungs to become inflamed– this isusually a mild condition, but can be serious in childrenwith heart conditions.

LV function: the pumping of blood by the left ventricle


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The first call on our attention is reaching out to families atan early stage. We do this by providing packs ofinformation 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 wellas our latest magazine, colouring booklets sharing hospitalexperiences with children, and basic information aboutfeeding, and dental care. If a donation has specified ahospital for receipt of Heart Children: a practical handbookfor parents, this can be included in the pack. Otherwise aflier for the book is included – p20.

Website Forums: Our forums on the website are open tofamilies whether they are members of HeartLine or not.

Here expectant mothers who have just heard their babyhas a heart problem can ask anonymously for theinformation that only families can provide about theexperience of caring for a child with a cardiac condition,sometimes even before it is discussed with a partner orfamily.

Many heart children are problem feeders, and sharinginformation and advice on feeding is very helpful to thosewhose infant will only eat the odd chocolate button.

Sending encouragement and help to those whose child isundergoing surgery, celebrating the tiny successes ofsmiling, standing, walking, sympathising with those whoselives have been torn apart by grief – all are the stuff of ourcommunity online.

Advice: We can offer advice by telephone, by puttingfamilies in touch with others who have the same kind ofproblem, providing an internet forum, sending regularpublications. We often are told ‘I don’t know what I wouldhave done without HeartLine – until I read a story in themagazine I had no idea there were other children with hisheart problem around.’

Other areas where families can be hugely mutuallysupportive relate to eating – heart children can benotoriously poor eaters – dealing with school, nurseries,employers, hospital appointments, and periods when achild is an inpatient. JD’s mother describes how sheturned to HeartLine when she took her son home fromhospital without enough oral syringes essential foraccurate dosage – see page 19

Information from HeartLine families has been fed throughto policy-makers – our need for maternity servicesadjacent to surgical units, the development needed in localservices, the improvement in waiting times andcommunication around surgery – and some are reflectedin the Standards against which children’s heart servicesshould be measured in future.

We still need more attention paid to local services – thelocal children’s heart network:because this is where a child’s life is often saved – by theskill of the prenatal sonographer, by the knowledgeablemidwife or health visitor, by the GP who can refer to aspecialist local pediatrician, the accuracy of the local

HeartLine is run by parents for parents. We aim to offersupport 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 apanicked struggle to get health problems diagnosed, or ata later stage as a result of another illness, can makefinding support difficult. Again and again we hear parentsbemoan the fact that they did not hear of HeartLine at thetime they were most anxious, and needed the comfort ofsomeone who had been through the same experience.

One morning a newsletter plopped through my letterbox,HeartLine. I had forgotten about the charity. I found awebsite address for their forums and finally had a releasefor my fears and worries where they were understoodtruly 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 itI wouldn’t be here (stating the obvious) but I mean it – myheart works: it beats just like yours, it works and that’s allI care about. It’s given me 17 years of non-stopentertainment and I will never let it stop me, I live my lifejust like the rest of you. – page 7.

Their parents, too, often stay with us, supporting youngerfamilies facing the problems that heart conditions bring,injecting fellow feeling and optimism from their ownexperience –Yes, it’s been a tough year but the NG tubeis out, he has put on weight and has started nursery,which he loves, and has make lots of new friends who allfuss over him and want to look after him. – page 6.

Sadly many of our members have suffered abereavement. We are fortunate in that they, too, oftenremain with us, offering their hard won experience andempathy to others.

HeartLine Review

What we do

How HeartLine makes a difference

To keep you up-to-date this review covers What we do, How HeartLine makes a difference, AnnualReport 2009-2010 and Into the future – a brief review of what has been happening since November2010 – a time of major change for our charity – and our hopes for the future.


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pharmacy, the availability of a well equipped accident andemergency department. Without these services somechildren will die. See page 16.

Member only benefits: Our members are entitled tonominate their children for short PGL activity holidays inthe summer (one for heart children, one for their siblings).

We have two caravans, one in Mablethorpe, Lincs, theother in the New Forest, where families can spendsubsidised breaks.

Often swimming is an activity children with heartconditions can participate in and enjoy, but poor circulationmeans that they lose body heat very quickly, and become

too cold to stay in the water. HeartLine provides wetsuitsfor children from babies to strapping teens.

A HeartLine summer party is held each year – at thebeautiful Wetlands and Wildfowl Trust in the last few years.

The comprehensive Heart Children book is available at amuch reduced price to members: this covers manychildren’s congenital and acquired heart conditions,prenatal diagnosis, diagnostic tests, feeding, treatmentsincluding medicines, surgeries and catheter procedures,consenting, nursery, school, benefits, bereavement andsources of help.

If you would like to see a full copy of the AnnualAccounts/Trustees Report you can download it from theCharity Commission website or request it from HeartLine.

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

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

The Trustees elected in April 2010 took the difficultdecisions to close the Camberley Office and maintainHeartLine without office support. This was entirely due tothe economic climate and its severely detrimental effectupon HeartLine’s financial stability. Failure to restructurewould have seen our charity fold within a matter ofmonths.

The Office was closed in September 2010. We had to saygoodbye with thanks and many regrets to Pam Lawrence,long serving office manager, Neville Terry, our fundraiserfor many years, Helen Baker and Lorna Russell. The

Annual Report 2009- 2010The HeartLine financial year runs from November to October.


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Trustees took on the work as far as possible, with supportfrom our website Forum moderators and other volunteers,and were able to maintain projects successfully to the endof the 2010 year.

Although we have seen significantly reduced donationsthrough losing our employed fundraiser, our staff andaccountancy costs have reduced from £80,000 in 2009-10to an expected £3,000 in 2010-11, thus ensuring thesurvival of HeartLine, while maintaining our services to ourmembers.

Projects 2009-10Heart Children – HeartLine published a new edition inOctober 2009. We have had some donations to enableus to provide books to nominated hospitals, but arehaving to charge our members for copies to coverproduction costs.

The Magazine continued to maintain its excellentstandards, and was published three times during theyear.

Hospital Packs are still very popular with hospitals andout-patient clinics, but fundraising was slow during theyear for this project.

The two holiday caravans continue to be appreciated byour members. The Trustees reviewed both caravans andassessed their functional and commercial viabilitytowards the end of the year and agreed to support themwith remedial plans for the 2010 – 2011 year

Sailing day activity was curtailed due to lack of funds andthe yacht we used being laid up for repairs.

The PGL Adventure Weekends were a great success –they are run as separate heart children and siblingweekends, allowing children to meet and make friendswith children in similar or identical situations.

We raised funds to supply wet suits to children with heartconditions. These suits keep children warm in the waterso that they can get the exercise that they need.Demand outstripped funds raised.

The Summer Party was held once again at the LondonWetland Centre with the invaluable support of GoldmanSachs, both financial and enthusiastic input from their staff.

Gratitude for supportSadly we cannot thank all donors individually in this publicspace (some have declined to be thanked) but a hugethank you is extended to the companies who made ustheir charity of the year, the schools who held specialdays, the many who jumped onto their bikes, and out ofplanes, sold cakes, organised parties and went withouttheir Christmas presents in order to support HeartLine.

We wouldn’t survive without you. – every pound has beenspent on families whose lives are improved by just knowingthere 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 especiallywith the Forums

Kevin Ford – for his many years as Trustee, Treasurer andVice Chair of HeartLine, and his continuing essentialsupport both administrative and practical.

Lisa Casey – for her support and years of Trustee input

Alison Keen – for her support and long standing asTrustee 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 andHelen Woods – for their work as Trustee/volunteeradministrators from April 2010

Sarah Sparkes – for her work as Chair of Trustees and forundertaking much administrative work

Kate Hatcher, Kerry M-S, Sheran Taylor and ValThubbron – for their roles as Senior Moderators on theHeartLine forums

Sarah Batt, Annabel Blanch, Liz and Keith Collins,Shelly Coombs, Rosie Freeman, Sue Gearing, KateHatcher, Margaret Horstead, Annette Jackson, JanKingsly, Jan Lyons, Elaine Murray-Bell and ValThubbron – for their work as members of the CoreSupport group

Children’s Heart Federation – for provision of a desk intheir Office, and meeting facilities for the Trustees.

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


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The Trustees are pleased to report the restructuring ofHeartLine Association is proving to be a success, withHeartLine emerging as a stronger more stableorganization ready to face the future with confidence.

But despite making savings of nearly £5,500 a month weneed to seek increased funding to maintain the level ofservice of previous years

MagazineAlthough much material can be presented via the internet,we have found that posting out our magazine is a majorway of preserving contact with and between families.Postal costs are making this prohibitive and we have cutthe number of full magazines and replaced with shortnewsletters to keep people up-to-date. These cannot fulfilthe same function and we badly need funding to preservethree magazines a year at a cost of £6,500.

Heart Children bookMembers of HeartLine are charged a minimal sum for HeartChildren – a practical handbook for parents. We would liketo donate a copy to all families who need the wide rangingadvice it contains – this would cost around £10,000.

We are also in desperate need of experience and funds tobe able to translate this latest version into various otherlanguages at a cost of around £5,000.

CaravansWe try to keep costs as low as possible so that familieswho are hard-pressed to find money for holidays canenjoy the facilities the caravans offer. Major repairs oreven replacement may be needed if we are to keep thismuch appreciated service – we need to raise £3,000urgently so that caravans are fit-for-purpose next season.It also costs us £8,000 per year to be able to provide thecaravans for families.

PGL Adventure HolidaysEveryone whose child has enjoyed these short breakshave seen what a difference they can make. Many of theheart children have never been away from their familiesbefore, let alone undertaken a range of enviably robustactivities!

The brothers and sisters of heart children can lose out inmany ways. Not being the main focus of a family’sconcern can harm a child’s sense of self. Often theiractivities have been restricted by the health problems oftheir brother or sister.

Together with heart children or sibling peers, and in safesurroundings, where he or she is not ‘different’, a child’sconfidence in themselves as individuals and as teamplayers can grow enormously. These holidays areaccompanied by experienced parents as well as benefitingfrom the PGL expertise.

To send a child for this very special experience costs £94.

Hospital packsWhere do people find parent-to-parent support? We arethe only member organisation for families whatever theheart condition their child suffers from, wherever the childis treated. Reaching families at the time they need us mostis very difficult – the hospital pack is a way of making thatconnection. We are grateful to the hospitals which handthem out – but we know that 5000 children a year are bornwith heart defects, and many more acquire heartconditions during childhood – we need to raise at least£10,000 to get to those most in need of support.

Sailing holidaysAs HeartLine moves into a more stable future, we will belooking to promote this activity further as it offers a greatopportunity for relaxation and bonding for our memberfamilies

Summer partyOur summer party has been held in London over the lastfew years. Some families do travel from as far as Glasgowto participate, but we would like to run similar events in theNorth and South West to give more Mums and Dads andchildren the opportunity to enjoy the positive experiencesthat these occasions offer.

WebsiteWe currently run a main website which providesinformation and resources to families, plus a livelydiscussion forum for members and guests, which providesthe much needed support for families at various stages ofdealing with child heart conditions. We also run atranslated website to provide information to families whoselanguage is not English. The cost of running these and ouronline email/storage accounts is around £1,700 per year.

Heart of StarsBereaved members should be able to look to HeartLine forsupport and to contribute their own hard won experienceto others. We want to build on our Heart of Stars tostrengthen relationships and links with bereaved familiesas members of our community, and intend to try to raise£1,500 towards improving the function of the Heart ofStars and producing remembrance cards.

Wet suitsChildren with heart conditions often have very poorcirculation and can’t maintain their body temperature whenswimming, even in heated pools. As swimming can be asafe form of exercise for children unable to participate insports, a wet suit can be an advantage. Offering wet suitsfrom baby size upwards allows parents to feel confident ingetting their child involved. We need to raise £500 to meetcurrent demand, and around £1,000 per year to providethis service.

Into the future

Riding the dream


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Seriously wrongWe tend to think that, with all the diagnostic equipment available, most children with serious congenital heartdefects are diagnosed before or shortly after birth. Unfortunately that isn’t so, and the Think Heart campaign whichstarts in November this year, is to encourage local health services to check whether symptoms are being causedby 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 andfeet looked really blue, completely different from the restof his body. Ian asked the midwife if this was normal andshe replied ‘his blood circulation is not up to scratch’. Soas a new parent, no older children, both me and Ianthought she knew what she was talking about.

FineI tried breastfeeding, but Jamie didn’t seem to beinterested. After three weeks of struggling, we switchedto bottles, which seemed to work much better, althoughJamie never seemed too hungry or desperate for hisbottle. He gained weight, kept growing and reached allhis milestones when he was supposed to reach them. Athis ten month check up, the health visitor said he lookedfine and his development was fine as well.

Up until this point, we never even noticed any differencebetween him and any other baby. Just after his firstbirthday, when he started to get a bit more mobile, wenoticed he would get quite breathless and he would goblue around his mouth and cheeks. After quite a fewcomments from different people (is he cold? does hehave asthma? etc) we started to worry a little bit anddecided to get him checked out at the GP. Obviously weweren’t too worried because we went on holiday to Italyfirst! I rang the GP the week after, thinking it might be achest infection or, worst case scenario, asthma.

TestsSo we took Jamie to the GP on 21 September 2010 andtold him about our concerns. He listened to Jamie’sheart and asked some questions and asked us to wait inthe waiting room because he wanted to speak to apediatric doctor at the local hospital.

A few minutes later, the GP came to tell us that we hadto go straight to our local hospital to run some tests. Bythen, we still didn’t realise anything bad was going onand expected to be home in a few hours. We ended upon children’s A&E and they checked his sats, which werejust above 50%. The nurse thought the machine wasbroken and got a new one which also showed sats ofaround 50-60%.

Something seriously wrong I took Jamie for an x-ray and a while later a consultantcame to tell us we had to stay overnight. We would bereferred to the Royal Brompton hospital in London thenext day. He also told us there was something wrongwith Jamie’s heart and he possibly needed heart surgery.

Even then, I stilldidn’t realise itwas that bad.

The next day, wewere taken toRoyal Bromptonand after an echoand another x-ray,the consultantcame to tell usthere wassomethingseriously wrong withJamie’s heart. He saidJamie needed open-heartsurgery and all I could thinkwas; ‘our baby is going todie!’ I don’t know muchabout hospitals andprocedures, but I did knowthat open heart surgerymeant stopping the heartand putting Jamie on aheart-lung machine. That,to me, sounded like a reallyhigh risk procedure so all Icould think was, we mightlose Jamie. I felt awful andhad the feeling my wholeworld had fallen apart.Luckily, we soon found outthat the surgery wasactually quite low risk andchances of everything goingwell were around 97%.

After this devastating news, we were told that theywanted to do a heart catheter procedure to see whatexactly was wrong with his heart as they weren’t surethey got all the information on the echo.

Cancellation, cancellation, catheterThey planned the procedure for Friday so we stayed inhospital for two more nights, but on Thursday evening wewere told that the procedure was cancelled andrescheduled for Monday, so we could go home for a fewdays. On Sunday we got another phone call that it wascancelled again and rescheduled for the following Friday.

We went back to the hospital on Thursday and he wasfirst on the list for the catheter on Friday. When the timecame to leave him behind in theatre I thought I wasgoing to collapse. What an awful sight to see your littlechild struggling and fighting the anaesthetic! A few hours

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later we got a phone call that everything went well andwe could go to the recovery room. Jamie was so upsetwhen he woke up and didn’t see us, that he pulled outhis cannula from pure frustration!

Within a few hours after the op we were told we could gohome and things went back to normal as soon as westepped through the door.

Less anxiousOn 19 October (my birthday, of all days) the hospitalcalled me – they wanted to do open heart surgery on 25October to try to open his blocked artery. We arrived atthe hospital the day before and when they did Jamie’sblood tests, they placed a cannula in his arm as well. Thiswas a godsend because they could put his anaestheticstraight into his bloodstream and he fell asleep withinseconds without any struggle. Ian and I came out of theanaesthetic room really calm and I think we were lessanxious whilst we had to wait as well because of this.

Jamie went into theatre at 11am and around 6pm we gotthe phone call that he was taken to PICU and everythingwent well. The surgeon wanted to have a word with us toexplain some things, which worried me. All I could thinkwas, something must have gone wrong. Luckily nothingwent wrong but he did explain they had to change theprocedure because his aorta was in the way and it madethe procedure too high risk. So instead they placed a BTshunt from his arm to his lung to let the blood vessels andveins grow over the next few months.

Normal for a whileAfter three days in intensive care and two more days onthe ward without any complications, we were back homeon 29 October. After a check up a few weeks later, and sixweeks of lifting Jamie carefully, things went back to normalfor a while. They told us they wanted to do another heartcatheter within six months of his shunt operation and a fullrepair within a year. So in May this year, we finally got aletter through for his heart catheter.

He had his second heart catheter on 24 June and theyonly checked if everything looked the way they expected,which it did. It was, again, really straightforward and wewere back home the same day. Two weeks after hissecond catheter, we got a letter from the hospital, sayingthey want to do his full repair op soon.

So now, all we can do is wait for a date for his next andmost dreadful operation. It scares me to death to eventhink about what they are going to do to my little bravesoldier, but unfortunately there isn’t an alternative so wehave to get on with it.

A different perspectiveIt’s been less than a year ago since we discovered ourhealthy happy child wasn’t as healthy as we thought and itstill feels as if it’s all a dream sometimes. When someoneasks me about Jamie, it feels like I’m talking aboutsomething I just read in a magazine. On the other hand, ithas put my life (and my family’s life) into such a differentperspective. We appreciate little things much more and domore fun things and enjoy life.

It just frustrates me that you sometimes have to gothrough so much heartache to realise how precious life is.

Terms usedCongenital: present at birth

Pediatric doctor: a doctor specialising in children, apediatrician

A&E: accident and emergency

Sats: short for saturation level. The amount ofoxygen the blood is carrying. This is normally 98-100%

X-ray: a test using rays to see the more solidstructures inside the body

Consultant: senior doctor

Echo: short for echocardiogram – an image of theheart created by using high frequency sound waves.

Heart catheter: a cardiac catheter – a tube which isput into the heart via a vein. It is used to helpdiagnosis, by measuring pressures very accurately,or can treat a problem such as widening an artery, orclosing a hole.

Blocked artery: an artery is a blood vessel whichcarries blood away from the heart. Blockage issometimes caused by a valve not being properlyformed or missing altogether. This is sometimescalled atresia.

Cannula: a tube inserted into a blood vessel and keptin place so that it can be used several times withoutthe need for new injections.

PICU: Pediatric Intensive Care Unit.

Aorta: the main blood vessel carrying oxygenatedblood from the heart towards the body.

BT shunt: a passage created to carry more blood tothe lungs for oxygenation.

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Children’s Surgical Heart UnitsMany HeartLine parents will have been anxiously followingthe Safe and Sustainable review of children’s heartsurgery hospitals – but there will also be those who haverecently become the parents of children with heartconditions and may want a brief round –up.

This has been a hugely controversial issue – severalparent groups have produced massive petitions to keeptheir current surgical unit open, there have been questionsand debates in Parliament, rallies and marches.

The best way of catching up with the current situation andthe many issues that have been raised and are beingconsidered is to look at the websitehttp://www.specialisedservices.nhs.uk/

Briefly the stated aim of the review is to develop a nationalservice that has:

� Better results in surgical centres with fewer deaths andcomplications following surgery

� Better, more accessible assessment services andfollow up treatment delivered within regional and localnetworks

� Reduced waiting times and fewer cancelled operations

� Improved communication between parents and all ofthe services in the network that see their child

� Better training for surgeons and their teams to ensurethe service is sustainable for the future

� A trained workforce of experts in the care andtreatment of children and young people with congenitalheart disease

� Surgical centres at the forefront of modern workingpractices and new technologies that are leaders inresearch and development

� A network of specialist centres collaborating inresearch and clinical development, encouraging thesharing of knowledge across the network

… and many other important outcomes.

At the start of the review a set of standards were developedand 11 hospitals in England offering surgery reviewed by anexpert panel to look at the hospitals which are currentlyplaced to meet the standards.

The Joint Committee of Primary Care Trusts – which hasthe responsibility of making the recommendation to theDepartment of Health – looked at the evidence produced byan expert panel set up to review the eleven surgical units inEngland , clinical groups, professional groups andassociations, charities, parents, hospitals and patients. Itthen produced four options for a reduced number ofhospitals which should continue with surgery. Of thehospitals nine were included in one or other of theseoptions – one because surgery had recently ceased, andthe other as it was considered that only two of the threeunits in London would be needed.

These options were put out for consultation – meetingswere held around the country and the public consultationhas now closed.

The Royal Brompton Hospital was not included in theoptions and has been granted a judicial review of thedecision to exclude the hospital from the consultation – thatis, a court will rule on the legality of the decision by the JointCommittee of Primary Care Trusts.

Obviously which hospitals should cease surgery is highlycontroversial, and some of those families whose hospitaldoes not appear in all of the four options feel threatened –they fear losing their local unit, meaning there would beincreased travelling and further time away from their familieswhen a child needs surgery, or some other specialist testsand treatment. In some cases young people would nolonger be able to remain at the same hospital as theybecome adults. There are claims that there would bedangerous delays in getting children to emergency care.

The loss of relationship with a surgical team, which mayhave treated your child for several years, is seen not only asreducing the quality of care the child will receive, but alsothe loss of emotional support parents have come to rely on.

Provision locally – a personal viewHazel Greig-Midlane writes: I have been involved incampaigning for improved treatment and facilities for ourchildren since the start of this century. Although I haverepresented individual HeartLine members’ views (theStandards include many of these) HeartLine Trustees haveagreed that we would keep members informed but we wouldnot and could not represent a definitive set of views to thereview.

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

diagnosed, require emergency treatment, and are more likely toneed monitoring and transplant in the longer term, yet this veryvulnerable group keep being ignored or overlooked – or maybesomeone somewhere just thinks ‘congenital’ is a catch-all todescribe childhood heart disease.

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

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

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

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response of many parents is absolute fear. They haveexperienced at first hand the ignorance of a GP, the lack ofknowledge 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 achild’s life is often saved – by the skill of the prenatalsonographer, by the knowledgeable midwife or health visitor, bythe GP who can refer to a specialist local pediatrician, theaccuracy of the local pharmacy, the availability of a wellequipped accident and emergency department.

Without these services some children will die. The issue is veryrarely how quickly can you get a child to a heart surgeon, buthow quickly is the child’s condition recognised and referred to apediatrician who can stabilise him or her.

So a network for heart children should include a local hospitalwith children’s doctors and nurses who have had extra trainingfrom a paediatric cardiology centre, and telemedicine links with

a PCC. This would mean that as soon as a midwife, healthvisitor or GP had any doubt about a child’s cardiac health, he orshe could be referred immediately, either for diagnosis andpotentially for stabilising treatment, or referral back to the GP asheart healthy.

‘How long has your child had a congenital heartdefect?’And this network must recognise that much of the care of thechild is by the parent in the home.

Parents have responsibilities in recognising symptoms,accessing diagnoses, finding and administering unusualmedicines, informing and passing on instruction to the child,other carers and educators, other clinicians and health careworkers.

The parents are not just the recipients of care services providedby 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 fromHeartLine summer party at

Wetlands 2011

BELOW: Sibling PGL holiday2011

Provision locally – continued

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We are very pleased to be able to offer HeartLine members freewetsuits for their children with heart conditions. The next orderwill be going in very soon. If you haven’t done so already andwish to have a wetsuit please call HeartLine on 033 00 22 44 66or email [email protected]

We will need

• 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’smeasurements before ordering:

Size Approx Age Top of zip Chestto crotch

XXS 0-6 months 10” / 25cm 18” / 46cm

XS 6-12 months 11” / 28cm 20” / 51cm

S 12-18 months 12” / 30cm 20” / 51cm

M 18-24 months 14” / 36cm 23” / 58cm

L 2-3 years 15” / 38cm 24” / 61cm

XL 3-4 years 16” / 41cm 24” / 61cm

Size Approx Age Chest Neck toCrotch

XXXXS (4XS) 2-3 years 22” / 55cm 15” / 38.5cm

XXXS (3XS) 3-4 years 22” / 55cm 17” / 43cm

XXS (2XS) 4-5 years 23” / 57cm 17” / 43cm

XS 6-7 years 24” / 62cm 18” / 45.5cm

S 7-8 years 26” / 66cm 19” / 46.5cm

M 9-10 years 27” / 70cm 20” / 51cm

L 10-11 years 29” / 74cm 21” / 53cm

XL 11-12 years 31” / 79cm 21.5” / 55cm

Keira, Jarvie and I set off from home at 8am and reachedJon and his 40’ ocean yacht at about 10am. We wereintroduced to the yacht and David, who was helping Jon outthat day. We had a cup of coffee while we looked at themaps. Ocean maps are different to land maps, they mark thegradient 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 sotrendy but warm and dry). We sailed out across to the Isle ofWight and had quite a bumpy ride due to strong winds andbouncy waves. It took us an hour to trust that the yacht wouldnot tip us overboard, because we were riding at a verypeculiar angle to the sea. Jon explained that the bottom ofhis yacht had a lead weight underneath several feet longwhich prevented us from tipping over.

We anchored in a calm bay to eat a delicious lunch of cheeserolls, salmon and cream cheese and sliced veg. While wewere below deck the anchor had dragged and almost bumpedinto our neighbours. Luckily David checked half way throughhis lunch and managed to move us to safety!

We rode back to the coast smoothly even though the windshad reached over 30 knots. I experienced several full frontal(waves in the face) and Jon had to act quickly when herealised the main sail was ripped. We gathered the sail in

quickly and used theengine for the rest ofthe trip home. Onceback we ended ourafternoon with coffeeand chocolatebiscuits. We teasedJon and David a bitabout our ‘gentleadventure’ as it hadbeen anything butgentle! Jon said he’dnever had suchstrong winds, adragged anchor anda ripped sail in manyyears of sailing withfamilies. We wouldn’thave had it any otherway, we had afantastic day, thebest day out we’ve ever had as a family.

We would like to thank you all at HeartLine not only forgiving us a fab day out but also for being there when familiesneed you!

Gentle AdventuresAimee Georgeson writes:

Wetsuits...

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A very hard experienceJD’s mum recounts some of the problems her eight year old son encountered:

We had less than twenty-four hours notice to get to thehospital for JD’s third lot of open heart surgery, the originaldate we had been given had been cancelled and they feltit was better to squeeze him in sooner rather than later.

SnowWe had a nightmare journey to the hospital, all our trainshas been cancelled due to the heavy snow fall so we hadto drive into London through blizzardy conditions. Whatwould have normally been a straight forward hour trainjourney, took four long hours by car, stuck in traffic slowedby the heavy snow fall.

We finally arrived at the hospital, cold, hungry andstressed and made our way to the cardiac ward like wehad been told to do earlier that day.

Not preparedOnce on the ward we were surprised to find that no oneactually knew why we were there, they had no knowledgeof JD being admitted that afternoon or his surgery thefollowing day – they were not prepared for our arrival at all.We were left waiting for what felt like hours while variousnurses and other hospital staff tried to find out what wasgoing on and where we were meant to be. Although it wasstressful the hospital staff did all they could to help.

No roomOnce they realised that we were in the right place, wewere informed that we could use the patient hotel so thatwe could all stay together the night before Little Man’ssurgery, but on arriving at the hotel we were quite rudelysent away as they were fully booked.

So once again we trekked back to the ward, now notknowing where we would be spending the night, again itwas utter chaos and no one was quite sure what to do withus.We felt uncomfortable and out of place, we felt like wewere not welcome, it was a bit like being an unwelcomevisitor.

Stuck hereOn top of that trying we were to reassure an alreadyterrified eight year old boy, who quite obviously did notwant to be there either. Trying to remain calm and keep myown fears in check was just too much. I just wanted to gohome by this point, but with the awful weather and the factit was by now quite late, I knew one way or another wewere stuck here.

Finally it was agreed we would spend the night on theward, but because of the “only one parent can sleep by abed” rule, we had to be separated and JD’s Daddy wassent to sleep somewhere else alone while I stayed withJD: much to JD’s disappointment.

Awful nightIt was an awful night. JD was terrified and refused to stayon the ward, so between the hours of 2am and 8am we satoutside the ward in a corridor. It was the only place I couldkeep my Little Man calm. As well as not wanting to upsetJD I was also worried he would wake some of the other

children that were also staying on the ward.

In the morning, once again no one was quite sure whatwas going on or when JD would be going to theatre. Hehad been on nil by mouth since midnight just in case hewas going down early, but by 10am and still no one hadbeen up to see him it was quite apparent that he wasn’tgoing down to theatre early.

Finally at about 11am we got to speak to someone whoknew what was going on. It was agreed that JD needed apre-med before going down as he was already quite irateand getting himself in a state.

Fear and angerThree lots of pre-med ended up spat at the anaesthetistand in the end an inconsolable JD was taken downwithout it.

Putting him to sleep was the most traumatic experience todate. He has been put to sleep for various ops andmedical 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 minutesbefore they were finally able to get him off to sleep. Bothhis Daddy and I were devastated. It is hard enoughputting your child through this as it is, but to witness oursweet 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 justfelt 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 gotthe call to say that he was out of theatre and on his way tocardiac intensive care.

RestA while later we were shown in to see him: he was settledfor the first time in days, resting so peacefully, wired up tothe ventilator and various other machines that wereallowing his body to rest.

Later that evening, as the doctors were stood over him

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discussing whether to wake him up the following day, hemiraculously sat up, opened his eyes and tried to speak.The doctors had a re-think and decided to let him wake upfully now and extubate him, with the intention of re-sedating him if he became too distressed.

JD was quite settled through the night and managed tostay off the ventilator and, by the early hours of themorning, 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 staffthat went near him that he was not going to be staying.

Less than 24 hours after having open heart surgery, mylittle boy was awake, off the ventilator, had his drains takenout, had left intensive care to go to the ward and evenmanaged to sit up, get out of bed and have a little walk aswell, 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 alreadymade his mind up that he wanted to go home andamazingly enough three days after having open heartsurgery we were told that there was nothing they weredoing for him there that we couldn’t do at home, so he wasable to come home. JD was extremely happy about this.

I was a little nervous taking him so soon, but knew hewould recover quicker in his own home. He had been sodetermined to get home right from the start, who was I tostand in his way – he knew his own mind.

SyringesWe were sent home with bags full of meds and a big list ofwhat meds he needed to take and how much, how oftenetc. It was a lot to take in as there was a lot of meds, but Iknew that once we got home, I would soon get the hang of

it, so wasn’t too bothered.

It wasn’t until we got home that I realised we had onlybeen given one syringe in each size and within a few daysthe numbers on the syringes were already beginning torub off and fade. I rang round, doctors, hospitals,community nurses and pharmacists all of who were aboutas helpful as a chocolate teapot. I wasn’t quite sure what Iwas going to, so tried my luck asking for help on theHeartLine forums.

The next few days our postman was kept very busy asboxes and packages containing various sized syringeswere sent to us. I am ever so grateful for this and seriouslydo not know what we would of done without the help of theHeartLine community during that time.

It turns out that because JD is now older it is not standardpractise to use a syringe for his medication, which is allfare and well for meds that have a standard 5ml or 10mldosage, but a lot of his heart meds and some of hisstronger pain relief meds were only very small doses,which are impossible to measure out accurately on a 5mlmedicine spoon.

I think someone needs to seriously review this policy!

Pharmacists are only paid to provide syringes whenliquid doses are not multiples of 5mls.

But we know that syringes are often needed to givemedicines because

� 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 andsent to school with the child for example

� Can be given where other children may cause spills or

try to taste from a spoon – a syringe can be a definiteno-no, a spoon isn’t.

� More acceptable to the child – less taste if miss thefront of the tongue

� Syringes are what a child is used to while in hospital

� Medicines can be given in more concentratedsolutions, so allowing child more stomach room forfood!

� Children like to use them themselves, and can selfadminister much more easily than from a spoon

Lack of free syringes seriously undermines the ability ofparents to provide the best care.

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For the past twenty-five years HeartChildren has guided parents andfamilies through the heart conditionthat children may be born with oracquire, the treatments available,and how to deal with the manymedical and social problems theymay have to face.

This fourth edition of the book hasbeen written by parents, nurses,doctors and counsellors, and hasattempted to keep pace with themany innovations in the field ofpediatric cardiology, which arenow preserving the lives thatwould have been lost a shortgeneration ago.

As well as answering manyquestions such as ‘When can anunmarried father consent to hischild’s treatment?’, it distils muchof the practical knowledgedeveloped in the kitchens,bathrooms and children’sbedrooms by parents strugglingwith 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 copySend a cheque made payable to HeartLine Associationwith a clear delivery address to 32 Little Heath LondonSE7 8HU

Members of HeartLine Association £6

Multiple copies £7 (includes postage)

Single copy £13 (includes postage)

About this BookThe discovery that your child has a heart defect can be avery scary experience. It is at this time, followingdiagnosis, that parents experience feelings of shock, panicand stomach-churning anxiety. The alarming high-techmedical world into which the family is catapulted oftencauses further fright.

Although doctors and nurses do their best to describematters, heart conditions are often so complicated and thesurgical procedures so technical, that parents, in the firstshock of diagnosis, often go away with an incomplete orerroneous picture of what is to happen.

Of course ignorance breeds fear as unanswered questionsemerge. Parents have enough to cope with at this timewithout taking on needless anxiety. Many other questionsarise as your child goes through the process ofhospitalisation, tests and surgery, so the second aim of thebook is to provide a little comfort here, in giving somegentle explanations and sharing experiences.

Finally, the advancingtechniques of pediatriccardiology have enabled manychildren to survive who would nothave done so even 30 years ago.So now, many parents areencountering for the first time thejoyful problems of dealing withschooling, physical ability,suitable careers, holidays (flyingand travel abroad), driving,insurance, genetic counselling,contraception, marriage,mortgages and a thousand andone situations which are hardlynoticed by 'ordinary families'.These produce questions for thefamily of a child with a heartproblem and many of these topicsare addressed in these pages.

Summary of ContentsUnderstanding the heart, prenataldiagnosis, diagnostic tests, themost common heart defects andarrhythmias, feeding, medicines,catheter procedures, open heartsurgery, pacemakers and other

devices, communicating, consenting, concerns andcomplaints, second opinions, in hospital, at home,childcare, nurseries and school, state benefits and supportservices, supporting bereaved families, sources of help.

Foreign language versions of Heart Children handbook

We have published the third edition of Heart Children inseven languages: Arabic, Hindi, Urdu, Gujarati, Punjabi,Bengali and Italian on the internet at our dedicatedwebsite.

The translations are a valuable asset to cardiologists andcardiac nurses and also to general practitioners andcommunity nurses who are responsible for communicatingthis complex subject to parents from minority groups. Thisis of tremendous benefit to parents who do not speakEnglish and to parents who speak English as a secondlanguage.

Also from HeartLineBaby Bill – the bear cub’s heart needs mending

Growly Bill – He’s growing up to be a big bear whosometimes needs an ECG

Dental Care for Children with Heart Conditions –endocarditis is rare, but children with heart defects areparticularly vulnerable, this booklet will help you protectyour child from tooth decay, abscesses and gum disease

My Heart Child Won’t Feed – sadly many children with heartconditions just don’t see eating as an activity they want toengage in. This short information sheet offers help andsympathy.

Heart Children:A practical handbook for parents...

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HeartLine’s Board of Trustees:Hazel Greig-Midlane, Vice Chair

Darren Pickard, TreasurerLouise Brazier

Support – to give and receive

One of the main ways in which HeartLine supports families is by putting them in touch withothers who have been in a similar situation – through the Forums on our website, or byemailing 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 ourcore support group.

Forums: go to www.heartline.org.uk/forum/message.html to discuss all aspects of life with aheart child, to give support and receive it, to find information and fellow feeling, to have theoccasional waffle and the odd rant

LIZ AND KEITH COLLINS: Keith can offer Dad to Dad support, and Liz isespecially knowledgeable about feeding strategies, Fallot’s Tetralogy, and teenagers with aheart condition.

MARGARET HORSTEAD: Margaret offers support to all families, andespecially 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 supportthose whose children are treated there. She is also a Senior Moderator on the HeartLineforums, so can sort out any problems in getting access.

JAN LYONS: Jan knows the Brompton hospital well and is well placed tosupport 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.ukOr contact us and ask for a membership form

Telephone 033 00 22 44 66Email: [email protected]

Post: 32 Little Heath, London, SE7 8HU

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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: [email protected]

Post: 32 Little Heath London SE7 8HU

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Documents

Heartline 2011 Annual Review