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Winter / Spring newsletter

2014

Heartline Families Official Launch Heartline Families is being launched at a gathering in London on Saturday 22 February! Following HeartLine Association’s final and 34th Annual General Meeting, we will be welcoming in our new charity. And if you were a member of Heartline, you are still one of our families with access to the same support and benefits. Check out members’ benefits out on the website at heartline.org.uk.

FREE Wetsuits For Heartline Families! Children with heart conditions often can’t maintain their body temperature when swimming or playing in water, even in heated pools, but we don’t think this means they should have to miss out! We offer a free wetsuit for a child who is a registered as a member on the database. All applicants will be checked by the Office before wetsuits are ordered and sent out. Visit the website ‘forum’ and login for detailed information about you can apply for your free wetsuit.

Like & Follow us at

Join us! Do you have a child with a heart condition? We can offer you support and a chance to share your fears, concerns and hard won knowledge with other families. We can provide subsidised holidays, wetsuits, an activity break for siblings as well as one for heart children, discounted holidays on caravan parks, a free copy of Heart Children book, discounted MedicAlert bracelets, children’s colouring books, dental leaflet and much more. For information about how to join (it’s free) see our website at www.heartline. org.uk and complete the online form. www.facebook.com/heartlineUK www.twitter.com/heartlineUK


A Star Named Sarah By Sarah’s mum, Anne McKain Our precious Sarah was born 17 January 1994. She was diagnosed with Truncus Arteriosus when she was just six weeks old, after she’d suffered from blue spells and we’d struggled with feeding her. Tests were carried out when she was three days old and they discovered a murmur. Dr Wren, from the Freeman Hospital, was able to tell us what was wrong with Sarah just by listening to her heart. He confirmed the diagnosis with a scan and told us she would need open heart surgery. It was an incredible shock.

I can still remember Sarah’s liaison nurse, Paddy, telling me not to wrap her up in cotton-wool and taking out her feeding tube saying “If she doesn’t take her bottle, she doesn’t get fed”. She never looked back and we were home within a week.

Mechanical valve

When Sarah was 13, Dr Wren told us she needed her next operation to fix or replace her aortic valve The op was cancelled quite a few times but eventually her valve was replaced. Her new valve was a mechanical one, which meant that Sarah ticked! She found this amusing, as people could hear it when they sat beside her. Many times people would say “your watch is really loud”.

Rushed to hospital

Within a week, Sarah was rushed to our local hospital, then transferred to the Freeman where they ran tests. We were eventually sent home, but within a week, we were taken back on the 2 ½ hour journey by blue light ambulance. This time I asked if we could stay at the hospital until she’d had her operation and, because the journey had been so frightening, they let us

The same symptoms Sarah had a normal life apart from her check-ups and tests. She did fund raising for Children’s Heart Unit Fund (CHUF) at the Freeman, with swims and raised money for Reece – a local boy with disabilities. She was doing fine until she was eight years old. Then it was time for operation number two, as her conduit pipe was narrowing. The op and recovery took a week and then she was back at home again. We got back into our normal routine.

Always smiling

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In March 2011, Sarah came home from school complaining about having a cold foot and legs. Her community nurse came and advised us to take her to A&E, as her foot pulse was weak. After a few hours of tests and being told they didn’t think it was a clot (as she was on Tinzaparine), they transferred her to Carlisle hospital. We arrived at 8.30pm, and by 12.30am she was in theatre, where surgeons removed three clots from behind her knee. She could have lost her leg that day. Doctors didn’t know why it had happened and, after a few days recovery, she was again taken to the Freeman to check her heart valve. She had a T.O.E, which was fine. They checked her leg and her pulses, which were good. Sarah was in a lot of pain and now had to learn to use crutches. She’d ended up with a bad infection in her groin, which they told us was ‘just one of those things’ and that it was unlikely to happen again.

Operation number two

She was 13 weeks old; the operation took six and half hours – it was the longest day ever. The operation went really well and Sarah went from strength-to-strength.

Three blood clots

Just ‘one of those things’

The longest day ever

Sarah was stable for a few weeks then the operation was arranged. It ended up having to be cancelled as she had an infection. A few days later, I was told they had a donor valve and were going to operate.

little sister Hannah at the local rugby club: this was to help fund the youth section.

Sarah enjoyed school and was very bright. She was always saying she was going to be a nurse. She had a lovely nature and was always smiling. She mothered her brother and sisters, enjoyed Brownies, St John’s Ambulance, swimming and cycling. Her fund raising continued with a bikeathon for leukaemia research and CHUF. She also helped out at our local rugby club.

Testing INR

One of the things Sarah had to learn was testing her INR and she had to take Warfarin for a while. This was fine for awhile, until we ran into problems with her levels and she started to have bad nosebleeds. She went to see the haematologist, who tried different things to balance the problem. After a few years, she went on Tinzaparin injections, which worked well and things settled down.

Sarah was off school for a few weeks and had only been back one week when she called me to say her other foot was ice cold. I took her home where we tried to warm it up. We didn’t think for second that it could happen again. After an hour, I took her over to the hospital, with the same symptoms as before. The surgeons again took her to theatre, where they removed another three clots from behind her other knee! She was in agony, as her other leg hadn’t yet healed. They transferred her back to the Freeman.

Passed with flying colours!

Sarah continued to study extremely hard for her GCSEs – all through her ops and hospital stays. She worked hard to catch up, which paid off as she passed all of her GCSEs! We were so proud of her. She still wanted to do nursing, but had now decided she wanted to be a children’s intensive care nurse. A Levels were the next step. Sarah carried on fundraising. This time she helped a friend to raise money for our local Oncology Department by setting up a charity. She also set up and ran her own tuck shop with her

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Tests were carried out and we were told that Sarah’s heart valve was clogged up with clots. Two days later she was back in theatre to have the clogged valve replaced. Sarah was still smiling and saying “I’ll be fine mam”. She was always polite and well-mannered to everyone, even though she was in a lot of pain.

Yet another blow

They removed the mechanical valve and replaced it. Back on the ward, the day after, I noticed Sarah’s arm was twitching very badly. I mentioned this to the nurses and more tests were ordered. Results showed that Sarah had suffered a small stroke and an MRI scan showed three small clots on her brain. They weren’t certain when the clots had formed. Heart-wise she was doing okay and we were transferred to the Royal Victoria Infirmary Stroke Unit. Her vision and balance were affected by the stroke and she’d lost some sensation in her leg.

A tough year

Sarah had a very hard year in and out of hospital. She regularly had check-ups at the Freeman. Then, about 12 months after her aortic valve was replaced, her pulmonary valve needed replacing. The surgeons didn’t want to put her on the operating table, as they said it was very unlikely that she would have survived. Six months later she had the operation through her groin, which went well. Sarah was still on crutches for her balance, but was slowly getting better. She’d started to learn how to drive and was looking forward to Christmas.

Chest pains and high temperature

We had a few more visits to hospital with chest pain and high temperatures. Then, in April, Sarah was admitted with a very high temperature. She stayed in for four weeks while they carried out cultures and kept her medicated on very strong IV drugs for Endocarditis. Sarah was discharged, but she still wasn’t right. She got herself through her A Level

exams and two months later she started to have severe tummy pains. She was admitted into hospital again and this time they tested her appendix. The results were ‘inconclusive’, but the surgeon decided to operate. She was taken to theatre on Friday afternoon where they removed her appendix. Her blood pressure was very low and they monitored her overnight.

A beautiful and courageous Sarah

On Saturday morning she deteriorated and went into cardiac arrest. She was having a bleed. She was brought back after 23 minutes. They took her back into theatre and stopped the bleed. Sarah was ventilated and sedated. We sat with her all weekend. On Monday they took her for a head scan because her pupils had blown. We were told that Sarah was brain dead. We had lost our beautiful, courageous daughter after all she had gone through for 19 years and we are devastated. Sarah was a campaigner for transplants. She helped a little girl called Katelyn Mcalevery. Sarah never got to see her get her new heart but I know she will have been watching over her. She encouraged people to join the donor register. When we were told that Sarah was brain dead, we did not hesitate to donate her organs as this is something she wanted. However, because the coroner was involved, and a post-mortem had to take place, we couldn’t carry out this wish. The transplant coordinator also said, because of the medication that Sarah was on, they probably wouldn’t have been able to use any of her organs.

Hard work paid off

On the 11th June, the day that Sarah died, we got a phone call to say she had an interview for an apprenticeship for which she’d applied. Over the next few days, she had a call from a university offering her a place. In August, we got her A Levels results, despite everything, she had managed to get

Bs in both her exams and all her hard work had paid off. We were so proud of her but we were so upset she wasn’t there to receive them. We believe she would have achieved anything she put her mind to. It would have involved helping people in some capacity as this is what she did all her life.

She touched so many lives

We still can’t believe what has happened. It wasn’t until after Sarah’s death that we realised just how many people Sarah had touched with her words of comfort and advice. I used to say “will you put that laptop down”, not knowing she was helping so many people. Even before she died she had organised a bingo event to raise money for the ward she had been on in April. This she never got to do, but we did it in her memory. We are going to carry on raising money for CHD research and to help children who have CHD. Sarah’s little sister, Hannah, has set up a fund called ‘Sarah’s Star Fund’. Sarah always tried to give back to those who helped her and those who needed help. We want people to remember Sarah for all the good things she did. If she was asked “how are you?” she would give one of those big smiles and say “I’m fine, how are you?”. I think we can all take something from that.

Final word from Sarah’s family Sarah’s post-mortem results showed that she died from an arterial bleed, cardiac arrest and brain haemorrhage. When her appendix was removed, it was found to be only slightly inflamed and surgery for the removal wasn’t critical. Sarah’s family urges the parents of CHD children, who are going into hospital for a non-heart related procedure or treatment, to make sure their heart consultant/cardiologist and hospital knows what is happening and that they play a part in any medical decision being made - even when they are not heart-related.

TERMS USED IN SARAH’S STORY

Truncus Arteriosus (TA) means that there is only one artery carrying blood away from the heart instead of two. Conduit pipe – artificial tube. Aortic valve – the valve between the main pumping chamber and the aorta. Anticoagulant medicines - reduce the ability of the blood to clot. INR (International Normalised Ratio) test measure of blood coagulation. Warfarin - anticoagulant normally used in the prevention of thrombosis. Tinzaparin - another antithrombotic drug in the heparin group. Haematologist - specialist in blood. Endocarditis - Infection of the heart. T.O.E - Transoesophageal echocardiogram - ultrasound probe is placed in your oesophagus (the pipe that goes from the mouth to the stomach), to take images.

MedicAlert In the event that your child needs emergency treatment, the MedicAlert emblem is engraved with your child’s medical conditions, personal identification number and MedicAlert’s 24 hour emergency number. Heartline is now an official partner of Medic Alert and can offer a discount on a first bracelet. This discount is for members only and can be obtained by contacting admin@heartline.org.uk (please put MEDICALERT in the subject line).

Join the Conversation

The Heartline Families forum is a valuable source of information, advice, understanding and, often, a shoulder to lean on when you most need one. From discussions around feeding difficulties and holiday insurance to support around the time of surgery and procedures - jump on the forum. We have new members who have just started to make friends and you could be one of them. You need to be a HF’s member, so please apply through the website: www.heartline.org.uk/joining-us or, if you’re already a member follow the site links to the ‘forum’.

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Let’s Get Physical! We are planning to run two PGL Activity Projects in August 2014 at Boreatton Park Shrewsbury, one for 12 heart children and one for 12 brothers and sisters. Children must be aged 9 to 17. The breaks are organised through PGL, the market leader for activity holidays.  Their policy is to help children to take their first steps towards independence and give them the opportunity to build self-confidence and make new friends. Each break will be accompanied by experienced Heartline parents. There is a qualified leader for all activities and children choose those within their limitations from a wide number including

abseiling, archery, arts and crafts, balls sports, climbing, circus skills, cycling, fencing, kayaking, kite making, motor sports, orienteering, nature trails, snorkelling and swimming. If you have registered as a Heartline family go to the Forum for more info.

Heart Children Book A practical handbook for parents…

For the past 25 years the Heart Children book 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 that they may have to face. The new edition has been written by parents, nurses, doctors and counsellors. This fourth edition of the book has attempted to keep pace with the many innovations in the field of paediatric 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 get your copy

Heart Children has guided parents and families through Children’s heart conditions, the treatments available, and how to deal with many medical and social problems. The new edition has been written by parents, nurses, doctors and counsellors. Single copies are free to Heartline Families. Multiple copies £7 Single copy £13 (includes P&P). Send a cheque made payable to: HeartLine Families, or BACS receipt for payment to Heartline Lloyds - sort code 30-96-96 a/c 59276960, with a clear delivery address to Heartline Families 32 Little Heath London SE7 8HU.

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Help Heartline With Your Payroll Did you know that you can help support Heartline tax-free with payroll giving? With ‘payroll giving’ your donation is made directly out of your weekly or monthly pay. Any donation, however small, can be a great help to us and it means it is taken out of your salary before deduction of taxes. This effectively means that for each £1 donated to Heartline the actual cost to you is about 80p.

Whether you can spare £1, £5 or more each month you'll be helping us to reach people just like you and your family. Visit this shortlink for more information: http://bit.ly/1c7VKSB.

You don't have to disclose to your employer which charity you want to support, all you simply sign-up to an online payroll giving agency and they transfer your donation directly to us!

Website Troubles Over the last year we have had a lot of problems with our forum boards being hacked. When HeartLine Association became Heartline Families, we closed the Forum to anyone who was not on our database. This is now an area for people who have joined Heartline only, where we can share experiences and histories, and make application for the benefits of our charity with some degree of privacy. This does not mean that Heartline services are only available through the Forum of course - we have Facebook, Twitter and a range of social media, a postal address and a telephone line to the office!

Volunteer PGL Leader Needed! Would you welcome the experience of offering support to young people who are often encountering their first taste of holidaying away from their parents? This year we are planning to send 12 children with heart conditions aged 9 to 17, from 1- 4 August to Boreatton Park, Shrewsbury. We are now looking for a young man or woman to become one of three Heartline Leaders who accompany them. You will need to have experience of a child with a heart condition – either personally, or as a parent or sibling - and some quantifiable experience of working with children or young people. You will need to be DBS checked before undertaking this role. You will need to get stuck in and you will get wet! You must be able to walk across / around the equivalent of a country park with some small hills. Get a better feel for PGL, the activities and the location here: www.pgl.co.uk Heartline pays travel and expenses to cover the four days. If this sounds something you would like to do, email Kevin Ford at admin@heartline. org.uk with a short CV.

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A Week In The Life of a ...

Cardiac Liaison Nurse

Sharon Bowcutt is a Senior Children’s Cardiac Liaison Nurse at East Midlands Congenital Heart Centre, Glenfield Hospital, Leicester. She took a moment to tell us about her week at work. I’ve been a paediatric cardiac liaison nurse since 1998 and have cared for children and adults with congenital heart disease since 1989, both in the ward and intensive care settings. I work within a team of four paediatric and two adult liaison nurses covering the whole of the East Midlands. We are all based in the same office, which is great, as it ensures continuity of care for our patients and families during transition to adult services. It does make me feel old though, when care is transferred and I remember them as a baby! We have an ‘open door’ policy, so families can always phone or call into the office. Calls can be around concerns over feeding, a child being unwell, exercise issues or how to obtain holiday insurance. In recent months there have been lots of calls regarding children starting school, transferring to high school or leaving home for university. We are always happy to speak to schools and will offer a joint visit with the parents and school nurse if this is helpful. Calls can be anything from a couple of minutes to an hour and a half. The liaison team also ‘man’ the anti-coagulation phone line. Families phone in with their INR results, we have the warfarin prescribed and then call families back with the dose and re-test date. We also ensure the families own Coag-u-check machines are calibrated and in good working order by checking all machines every six months and ensuring there are no problems with the family obtaining medication and to ensure they are using a good technique to test the blood. 8

No day or week is ever the same for me or the rest of the team, but I thought I would give you a little insight into my role. I have a plan for each day, but often my priorities have to change and I have to reorganise my workload to enable me to support a family.

Monday

My week starts at 7.30 listening to messages left over the weekend, and reading emails. At 8.30am, I join the Grand Round, a multi-disciplinary team of surgeons, cardiologists, intensivists, junior doctors and nurses. We have an update on the progress of patients over the weekend and make plans and decisions for the week. It’s everyone’s chance to pitch in with their opinions to ensure the best plan of care for our patients. Where I come in, is to ensure that the family’s wishes are heard and afterwards to ensure that families are fully updated with the plan and understand what this means for them and their child. Every other Monday afternoon I attend one of our outreach clinics in Nottingham with the consultant Cardiologist. These clinics are run with the local paediatrician with an interest in Cardiology. These clinics ensure both cardiac and general

paediatric issues are dealt with and ensure families have their care close to home, with exactly the same care and support they would receive in the cardiac centre. We usually see around 15-20 patients on these clinics. My role is to ensure families understand what the doctors have said, understand the diagnosis and are aware of issues such as endocarditis and the importance of good dental hygiene and avoidance of body piercing and tattoos! If I see children in clinic who need referring to other members of the team I will make this referral. For example a child who is scared of having a blood test can be referred to the play specialist team either in the cardiac centre, their local hospital or the community play teams. Other issues we may discuss are exercise limitations, careers advice and point families in the right direction for advice regarding benefits they may be entitled to.

Tuesday

This is my day off, or rather my cleaning, shopping, school, football and brownie run day!

Wednesday

Initially I catch up with the team, calls and messages from the previous day. Every Wednesday afternoon I attend the local maternity unit where we run a joint fetal cardiac clinic with the obstetricians and midwives. I will see prospective parents who have been referred by their local team when there is a suspected cardiac problem detected.

I will also see families who have had a previous child with a cardiac problem or a family history. This is obviously a very stressful time for all those attending the clinic: for those with a family history hoping that with this pregnancy all will be well, and for those where there is a suspected anomaly, hoping that the local team got it wrong and their baby is fine. For those who there is suspected anomaly, hoping that the local team got it wrong and their baby is fine. When a diagnosis is confirmed, the consultant will go through the diagnosis, the implications for their baby and options available to the family. Families are often in such a state of shock and have complete information overload, I know they won’t take in any more information at this stage and just need to go home. I give them my contact number, email address and some literature, and contact them within the next few days to offer to meet with them again or answer any questions over the phone. For some families attending clinic, it may be the first time they have seen the cardiac team since they have either ended a previous pregnancy or their child has died. Obviously seeing us brings back lots of memories and is very emotional for all. When we give good news, it is wonderful to see the relief on their faces and families say they can now hopefully start to enjoy this pregnancy!

Thursday

One of our three surgical clinics is held on a Thursday, a colleague or I will sit with families when they see the surgeons. This is as an extra pair of ears to ensure the family understand what has been said and also to give the families the opportunity to visit the ward, intensive care and the parents’ accommodation if they have never been an inpatient before. The play team will also be involved in preparing those children who are due to undergo surgery. 9


Our psychologist has been running a weekly group for some of our younger teenagers and I have been asked to talk to them about the heart, attending clinics and questions to ask, and about support groups and websites suitable for teenagers nationally. It was really interesting to hear what they had to say about their experiences.

Friday

On a Friday morning, we hold our new patient clinic. Children and families attending this clinic have often never attended hospital and are not aware of the investigations to be undertaken. I would first ascertain why they had been referred and ask the children if they know why they are in clinic. I do get some interesting answers to this! This is a one-stop clinic and I explain to families they will have various tests and see the doctor for the results, so will go home with all the results. If a problem is detected I will support the family and again give written information and the team’s contact numbers. Patients come back to the department one week after they are discharged home following surgery. This is a great opportunity for me to catch up with families – to make sure they are happy with medications, feeding plans and to ensure that any community teams involved have been in contact and that they are aware of plans for returning to school/ nursery if appropriate. As pleased as families are to be going home, the first week at home can be extremely stressful, particularly for new parents. This review allows any issues to be dealt with and give families an opportunity to chat and ask questions they may not have thought about whilst in hospital. This is a fairly typical week, I’m never bored, don’t always know what the day holds, but it is a privilege to be working with families and hopefully making a difference. 10

Pulse Oximetry Testing Update Over the last few months, the Children’s Heart Federation (CHF) has been working hard on the Pulse Oximetry Campaign to get all babies tested for heart conditions at birth.

A Tough Journey and a Brave Boy By Louise Jenner

Something not quite right

Shortly, after the birth, it became obvious something wasn't quite right as Logan was a white colour and Lucas was a bright, cherry tomato red. I was told they were very lucky to have been delivered when they were as they had Twin Anemia-Polycythemia Sequence (TAPS) TTTS. Logan the donor with not enough blood and Lucas the recipient with too much blood. After seven hours, Lucas had to be taken to SCBU as his blood sugars were too low and he needed his blood thinned twice. He spent a week in special care and Logan came home with me on day three.

The test measures oxygen levels in the blood and increases the detection rate of life-threatening congenital heart defects by up to 90 percent in newborns. CHF were delighted when the UK National Screening Committee (UK NSC), who advises the Government, held a three month consultation to get the public’s views on whether all babies should receive the test across the UK.

Large amount of evidence

Just before Christmas, CHF were pleased to submit a large amount of evidence in support of Pulse Oximetry testing to the UK NSC. This was thanks to the wonderful support they received from parents, who bravely shared difficult stories about their babies’ undiagnosed heart conditions. These provided invaluable evidence of the harm that can occur when congenital heart conditions are missed during a mother’s pregnancy scan and not picked up at birth.

Decision late March 2014

CHF were delighted that the UK NSC received over 300 messages of support from paediatric units, clinicians, professional bodies, the voluntary and community sector organisations and members of the public, demonstrating the widespread support for the test. The issue has been raised in Parliament and the UK NSC are currently reviewing all of the evidence, and are expected to make a decision in late March 2014. CHF are hoping that those making the decision are now as convinced as they are about how important the Pulse Oximetry test is. To support the Pulse Oximetry Campaign visit www.chfed.org.uk/pulseox.

we made it to the planned 35+6 weeks when the boys were delivered by c section on the 28 January last year. Logan was born first, with Lucas following just two minutes later. At this time I was unsure if either would need to go to SCBU. Logan weighed 5lb 1oz and Lucas a teeny 4lb 1oz. They both were going to be staying with me. I was over the moon.

A funny colour

After coming around to the idea of having number five, I then had the shock of finding out, at the first scan, that we were expecting twins. The next shock came at 13 weeks when we discovered they were identical twins. This had even more risks as they shared a placenta and the risks of twin-to-twin syndrome (TTTS) were high.

Once we were home, all was going well and we were started to establish a routine. At seven weeks old, I was concerned about Lucas' testicles - on one side it had ballooned. I sent my partner off to A&E with him to find out what on earth was wrong. He came home after being reassured that it was called a Hydrocele, where an accumulation of fluid has built up. He would be fine. We accepted this and I went off to make dinner. Sitting down a little later to feed the twins, Lucas went a funny colour, so I called my partner to come take a look. We watched him for a few minutes but his colour seemed to sort itself out and I continued to feed him. He changed colour again, but this time he went all floppy and lifeless. My son was dying in my arms. Phil grabbed him and almost immediately started CPR. I called 999 and the ambulance was on its way. It took nine minutes of CPR to get Lucas breathing again. He was taken by ambulance with an air ambulance on standby to receive him. He stayed in hospital for a few days.

I had weekly scans and the pregnancy was very stressful. Luckily there were no signs of TTTS and the only concern was with Lucas, the smaller twin, as he had Intrauterine Growth Restriction (IUGR) and could stop growing at any time, which would mean the boys would need to be delivered. Fortunately

We were told that it was suspected whooping cough. The tests went off and results would be back in a few days. We questioned them as Lucas didn't even have a cough but, once again, we left feeling satisfied, as they were the doctors and - more importantly - we had our son back.

In January 2013, I gave birth to twins Logan and Lucas. I have to say falling pregnant was a shock as I was on the coil and, obviously having four children already, I wasn't having any more!

Stressful pregnancy

Whooping cough?

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Lucas was home for just two days when he went blue/grey. We called the ambulance and gave him breaths – not full CPR. My God I was a mess. Thank goodness Phil was at home at the time, as I don't think I could have coped without him there. I dialled 999, put the phone on speaker and left the house. I just couldn't stop thinking this is it we have lost him this time. I paced up and down, in and out of the house.

Thank the lord

Finally something was happening, I had never seen so many doctors. Within an hour, Lucas was having an echocardiogram. They explained he had a problem with his heart and would need to be transferred to a specialist hospital. We were retrieved, the same day, by the Southampton PICU team. I was in shock and nothing was going in. Lucas was ventilated for the journey. I remember kissing him thinking this maybe the last time I would see him alive.

Condition finally given a name

This time we were told he’d had a respiratory arrest due to the season. It was viral. I wasn't accepting this and, once discharged, I started to Google. It happened again a few days later and we were back in again, with the same old answer – that it was viral. I Googled further.

Begged for an echo

I read about Congenital Heart Disease along with other conditions like reflux. The next time he had a blue episode, I wasn't happy about him being discharged and I told them we were not going anywhere until we had a diagnosis of some sort. I begged for xrays, heart echos, everything I had read about. I was told it was unnecessary he didn't have any murmurs or lung problems. I asked to be transferred to another hospital. The next day, at the doctors’ rounds, I asked for a transfer. I was being told he had reflux and I was overreacting. We were being sent home with Gaviscon. I was fuming. As I was having a word with the doctor, the registrar discovered a murmur through his back!

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We arrived in PICU at around 10pm on Friday night. A lovely team of people spoke to me. Lucas had an echo and I was given the actual name of his condition, which was coarctation of the aorta (COA) and a Ventricular Septal Defect (VSD). He would be first on the list for surgery the following morning. I can just remember thinking ‘I can’t do this alone’. My mother and fatherin-law came to support me, I wanted Phil to stay with the children at home. Looking back, I wish I’d had Phil there, but I wasn't thinking straight. I didn't sleep at all that Friday night. I must have visited PICU four or five times through the night.

Eternally grateful

The surgery went very well and they were amazed to say that the stitch couldn't even be seen. The first time they tried to take him off the ventilator, he didn't respond that well, so they had to try again the next day. We were home by Wednesday. To say I am eternally grateful to the surgeon and staff in Southampton is an understatement. I owe my life to them. Lucas is now 10 months old and such a character.

Honoured to be his mummy

He has had no problems since other than severe acid reflux for which he has medication. He had emergency surgery on his testicles, as ‘the fluid’ our hospital told us about, was actually a hernia. He also needs further surgery at a year of age as he has a Hypospadias so he really did get all the raw end of the deal - just like Danny Devito in the film TWINS. I have to laugh, otherwise I could sit and cry. He is a real fighter and I am honoured to be his mummy.

Talking to Your Doctor

Meeting with your doctor when your child is sick can be extremely stressful and many of us end up leaving appointments wishing we’d been better prepared to ask the questions we needed answering and having understood future plans. Here, is a quick-fire guide to help you prepare in advance to make the most of your child’s appointments. Preparing for your appointment You may find it helpful to make a list of questions you want to ask the cardiologist. Prepare the list beforehand and take it with you to the appointment. This may seem obvious but it can be very easy to forget to ask your questions at appointments so having them written down can be very useful preparation. Depending on how old your child is, you may want to prepare them for the appointment as well. If your child is a little older, ask them to think about any questions they want to ask the cardiologist. If your child is still quite young, you may want to check they understand what words and phrases like ‘breathless’ or ‘keeping up with your friends’ mean. This will help them to reply to the cardiologist’s questions. Taking someone else with you As a great deal of information can be given at appointments it is often very helpful to have someone with you and your child at the appointment.  It can be hard to remember everything that is said in an appointment and so with someone to support you this can make this easier.   General tips for appointments • Repeating what you have heard the cardiologist say will help to make sure that you have fully understood them. For example, “So you are saying that if my child has drug X, then Y will happen?” • If you do not fully understand what the cardiologist is saying, ask them to explain again • When talking about the heart, it is often helpful if the cardiologist draws you a • diagram, they will be more than happy to do this so ask • Take a pen and paper with you. If there is too much information to write down or remember, ask for it to be sent to you in written form or where they recommend you can obtain further information • Have a list of questions with you • Know what you want to accomplish from the visit. 

Remember: • no question is a stupid one; • do not worry that you are taking up too much of the cardiologist’s time as it is important that you get all the information you need; and • be assertive if necessary, but never aggressive

Finding out that your child has a heart condition • Finding out your child has a heart condition can be very upsetting. It can be hard to take in everything you are being told. If you think of more questions after your appointment, book another appointment with the cardiologist or ask to speak to them on the phone or email. • Some examples of questions you may want to ask are shown below: • Where is the best place to treat this condition? (Find out if there is a specialist paediatric cardiac unit that deals with this condition.) • What treatment does the cardiologist recommend? • Will my child need an operation?  

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Talking to Your Doctor... continued Discussing further tests If the cardiologist wants to do further tests on your child, you may want to ask the following questions: • What are the tests for? • What will happen during the tests? • When and where will the tests be carried out? • How accurate are the tests? • When will the results be available? • How often will these tests be needed Discussing new medication If the cardiologist is suggesting putting your child on medication, you may want to ask the following. • How long will my child have to take this medication? • What are the possible side effects of this medication and how common are they? • Are there any foods, other medicines or activities my child should avoid while • taking this medication? • What happens if the medication does not work? • What happens if we miss a dose?

• How will the operation benefit my child? • What are the risks involved in this operation? • What is likely to happen if the operation is not done? • Are there any alternatives to performing this operation? • Who will be doing the operation? • What are the success rates for this surgeon and this operation? • How long does this operation usually take? • How long will it take for my child to get back to their normal routine after the operation? • Will my child be left with a scar? • Is my child likely to need further operations or treatment after this operation?   Before you leave an appointment Before you leave an appointment with the cardiologist, check that you will be receiving a detailed letter about the appointment. Your GP should also get a copy of this letter. You should also make sure that you know what is happening next and why. Find out who you should speak to if you have any more questions.  Make sure you check you have asked all your questions.  

If in doubt... Make sure you have a contact number and email address for your child’s Cardiac Liaison Nurse who will be able to help you answer any questions at any point during your child’s treatments and procedures. Discussing an operation All operations carry some risk. If the doctor is suggesting your child needs an operation, it is important that you understand what these risks are before you decide whether or not to give your permission. Some of the questions you may want to ask in this situation include:

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See page 11 for an insight into the world of the Cardiac Liaison Nurse and how they can help you and your child. There are other specialist in your child’s hospital to offer you support in a variety of areas, from psychological and play to feeding and development - don’t be afraid to ask for help.

Happy Holidays! Did you know you that Heartline has two caravan holiday homes for family breaks. Feedback from families using Heartline’s caravans is often absolutely glowing, not least because they are both in such beautiful areas which offer so much for families to do. There are always some weeks not booked, so please think about making use of this fabulous resource when you are planning your holiday. One of our caravans is in Mablethorpe, Lincolnshire and accommodates eight people and the other is in Oakdene, Ringwood the New Forest and sleeps six. Mablethorpe has availability during the Easter, Spring Break and both are currently available at October half term (correct at time of press). Mablethorpe - school holidays are £340 pw / £140 term time. Oakdene – school holidays are £360 pw / £165 term time. If you are a registered Heartline Family please go to the Forum (www.heartline.org.uk/forum) for information on prices and booking in 2014.

Join our 100 Club! Would you like to help Heartline raise funds and at the same time have the chance of receiving a monthly cash prize? The Heartline 100 Club is a private lottery and is open to all parents and friends of Heartline. You do not have to be registered with Heartline Families and anyone age 16 or over can join. Join here: http://www. heartline.org.uk/fundraising/100-club/ Each month: There is a draw for 50% of the fund. This amount is divided between two lucky winners 60% to the 1st drawn, 40% to the 2nd drawn. Each member buys a £2 subscription per month. For example, if we have 100 members the fund for that month will be £200, 50% will be used as prize money e.g. £100, the 1st prize will be £60, the 2nd prize will be £40 You may buy more than one subscription per month. Payment is made by Standing Order monthly or annually.

Keep in Touch

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

Medical Terms

A full explanantion of the medical terms used in articles and features in this edition of the HeartLine magazine can be found at: http://www.heartline.org.uk/allabout-heartline-families/our-world/

Tell Your Story

Heartline Families is edited by Natalie Persoglio. Please send articles, photos and feature ideas by email to trustee1@heartline.org.uk 15


Heartline Families 32 Little Heath London, SE7 8HU www.heartline.org.uk Telephone: 033 00 22 44 66 Email: admin@heartline.org.uk Facebook: www.facebook.com/heartlineuk / www.twitter.com/heartlineuk Heartline Families is a Charitable Incorporated Organisation registered with the Charity Commission No: 1153442

Profile for Heartline Families

Heartline Families Magazine Winter / Spring 2014  

Heartline Families Magazine Winter / Spring 2014 Featuring: A Day In The Life of a Cardiac Liaison Nurse, How To Talk To Your Doctor, Pulse...

Heartline Families Magazine Winter / Spring 2014  

Heartline Families Magazine Winter / Spring 2014 Featuring: A Day In The Life of a Cardiac Liaison Nurse, How To Talk To Your Doctor, Pulse...

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