Summer
2019
Heartline Families’ Chair Meets the Queen
Heartline Families is a member of the National Council for Voluntary Organisations (NCVO) and we were invited to attend their centenary celebration at Windsor Castle earlier this year.
The event was aimed at smaller organisations that provide a direct service and/ or have a lower profile than British Heart Foundation or Scope, for example, and Kevin Ford attended on behalf of Heartline Families as Chair of Trustees. Following a pre-reception where guests met and introduced themselves to each other, we were led through to meet Her Royal Highness the Queen before moving on into to the main reception area, in St George’s Hall. It was great to meet so many people who have recognised and met a need, whether it be more established charities and organisations to individuals who have opened day care
centres for adults with special needs where their local authority is not meeting demand. Heartline Families was met with positive interest, especially when noting the significantly higher degree of congenital heart disease against childhood cancer. Whilst clearly not a competition at all, facts provide clarity. These compelling, and sometimes surprising,
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facts are what is required to achieve a similar level of awareness as some of the more recognised and understood illnesses and conditions receive. This helps to attract fundraising to help Heartline Families to roll-out existing projects and develop new ideas and benefits. In addition to this positive end, it helps us to focus on wider research, treatment and support challenges.
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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 2 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
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.
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?
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:
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.
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Join us! We’re a friendly group of parents, carers, family members and friends of children with CHD and we’d love you to join us. We can offer you support and a chance to share your fears, concerns and experiences with other families. We can provide: - 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, - children’s colouring books, dental leaflet and much more. - a thriving closed group on Facebook for private discussion. For information about how to join (it’s free) see our website at www.heartline.org.uk and complete the online form.
We’d love to meet your family... Would you like your child to feature in the ‘Meet our families’ pages? Please send us a brief outline including the story of your heart child’s diagnosis, treatment, family and location, with a photo, and we’ll do our best to include them. Don’t forget to include names and ages. Please send to Natalie at trustee1@heartline. org.uk, or post on our social media. Facebook.com/heartlineuk Twitter.com/heartlineuk
Dental Care and Heart Children fun! We have a series of free booklets and guides to help ease the journey of your heart child to outpatients and hospital. Have you got your copy? The guides are easy-to-read with pictures that can help to distract attention when it’s needed the most. Choose from:
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Hello, Baby Bill Growly Bill and the Outpatients Dental care for heart children
Please get in contact to order your information leaflet. Send an email with your details to intouch@heartline.org.uk with the title of your chosen guide and we’ll send them out to you.
Illustrations by Sheila Barnes
Help us! Heartine Families is possible thanks to the hardwork and dedication of its trustees and volunteers. We’re always looking out for people to help us run activities, raise funds and plan the future of the charity. If you have a few free hours a month, please get in contact with us at: intouch@heartline.org.uk 4
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Lara’s Story
wouldn’t have coped.
Simple gestures mean the world
Nothing describes the helplessness of parents when facing their children’s pain and fear. Hospital life makes you realise that despite all suffering, there is so much love being given by parents and staff alike. Sometimes simple gestures - like the doctor who would always play board games with the young patients - will help you get through it and see the light at the end of the tunnel.
By Lara’s mum, Christiane Tschapeedmonds I have been meaning to tell Lara’s story for a while but it wasn’t until her 12th birthday and the Facebook post by Heartline Families asking parents to write the story of their child with a cardiac condition that I finally decided to write it all down.
the GP came around to check on the babies it was clear that something wasn’t right asnd they picked up a heart murmur. Lara was immediately sent down to the intensive pediatric unit, where I would find her a few hours later already connected to various cables and equipment.
Surgery all over the world
Lara’s coorctation repair and the VSD closures were only the start of a series of ballooning procedures and open-heart surgeries that followed in the next years. These took place, not only in Oxford, but also in Australia where we lived for 5 years as well as back in Southampton two years ago.
Blue lights
The day after labour we were transported to Oxford via ambulance to have an echocardiograpm and further tests. I remember telling my husband how we were being transported by ‘blue light’ and noticed the quietness at the other end, not realising what blue lights really mean…
A dream pregnancy
Once at the John Radcliffe Hospital tests were done very quickly. By 11pm, I was told by a trio of cardiologist/anesthetist and surgeon that Lara would hopefully be operated on the following day. They told me that she had been born with a coarcation of the aorta, a VSD and a valve stenosis. The first condition was apparently the most urgent and needed correction as soon as possible.
Dealing with reality
Surgery took place the next day and, between pumping colostrum for Lara and trying to get to grips with the reality (why Lara? Was I to blame? Who was going to look after her big brother who was only 3?), I realised how lucky Lara was to have had the surgery so quickly. She was able to go home a week later. Thank, God she was a very big baby – 10 pounds – and, despite her heart surgery, she looked very healthy.
Feeding becomes a problem for Lara
A dream pregnancy
My pregnancy with Lara was very good and nothing indicated that her health would be anything other than completely normal. Admittedly I only had two scans and at that time (2001), and in hindsight, I know now that a normal scan wouldn’t have picked up a cardiac condition unless it was a specific cardiac scan.
The morning after
She was born within four hours with a natural delivery, which was wonderfully fast compared to the 18 hours with Lara’s big brother, Tom. Everything seemed positive to the point that Daddy went home and announced the good news of a healthy little girl. Next morning, however, Lara wouldn’t feed very well and looked very pale and once
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It was wonderful having her home and being able to bond with her, but I soon I realised that she wasn’t feeding well and would get tired very very quickly. She constantly looked grey and, when she started losing weight, I knew something was wrong. The mother instinct is never wrong! Despite my local GP saying that she was doing okay, even passing her on her three months health test, I decided to go to A&E and have her checked out.
Happy 12th birthday, Lara
Lara is turning 12 today. She plays netball, attends Year 7 at a local grammar school and does everything that a 12-year old does. She will have her next check-up in 12 months and will need eventually a final operation to replace her aortic valve. The timing of the procedure is still unknown and I learned that in life you have to enjoy every little moment of joy and happiness with your children and take each day as it comes. Thank you Lara for making me a better, more compassionate and kinder human being!
A mother’s instinct is never wrong
Once at hospital, she was immediately admitted with heart failure and put on various heart medications. Her VSD was bigger than expected but she couldn’t be operated then and had to be fed with high-calorific milk until her weight allowed an operation at the age of three months. Those three months living at the hospital were surreal and if it wasn’t for the help of my family with looking after Tom, and the dedication of nurses and doctors, I
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Work balance
Life balance Continuing to work and holding down a job can add further strain to parents and carers of children with heart conditions. Here we look at the facts of maternity/ paternity leave, time off, paternity leave and flexible working to help reduce your worries and put you in the driving seat at your workplace.
Telling your employer
Parents often experience emotions, such as anger, grief and denial on learning of a diagnosis. These feeling can make it difficult to tell other people, especially work colleagues that your child has a heart condition. However, it is important that you tell your line manager, especially if you are going to need time off or to change the date of your return to work after maternity / paternity leave. When arranging time off work, try not to make promises or commitments that you may not be able to keep. It is tempting to be optimistic but if you are not sure that you will be able to return to work on a particular date then explain this.
the 15th week before your baby is due, you will be eligible for Statutory Maternity Pay SMP. If you qualify for SMP, you now qualify for 39 weeks maternity leave.S tatutory Maternity Pay (SMP) is paid for up to 39 weeks. You get: 90% of your average weekly earnings (before tax) for the first 6 weeks ÂŁ148.68 or 90% of your average weekly earnings (whichever is lower) for the next 33 weeks.
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Medical appointments are almost always on a weekday during normal working hours and can take some time. However, the appointment letter will usually give you enough notice to make arrangements for time off from work.
Your child’s heart condition may mean that they will occasionally need an emergency admission to hospital. It might be helpful to try and make a plan for such an event and discuss it with those you work with.
Work and your rights
Maternity leave If you have completed 26 weeks continuous service with your employer by
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This is not an automatic right but your employers do have a duty to consider your request seriously, and will only be able to refuse if there is a clear business reason for doing so.
Others who rely solely on you for help in an emergency may also qualify. Examples of emergencies are when someone who depends on you is ill and needs your help or you have to deal with an unexpected disruption or breakdown in care, such as a childminder failing to turn up.
If your application is accepted, there will be a permanent change in your terms and conditions of employment. It is therefore important that you think carefully about which working pattern will help you best care for your child. Parental leave Parental Leave allows parents of young or disabled children to take time off work to look after their children. Parents who have completed one year’s service with their employer are entitled to 13 weeks unpaid parental leave, per child, up until the child’s 5th birthday. Parents of disabled children are entitled to 18 weeks unpaid parental leaveup to the child’s 18th birthday.
Time off work for medical appointments and admissions
Sometimes children are admitted to hospital from an out-patient appointment because their condition has started to deteriorate. Let your employer know if you think there is a possibility that this could happen. It may also be a good idea to warn any colleagues whose work will be affected by your absence.
Flexible working If you are the parent of a child under 6, or of a disabled child under 18, you have the right to apply to work flexibly. You can request a change to the hours you work, a change to the times when you are required to work, and to work from home.
SMP is paid in the same way as your wages (for example monthly or weekly). Tax and National Insurance will be deducted. Paternity leave Men can take up to two consecutive weeks paid leave to care for their new baby and support the mother. In order to qualify for paternity leave an employee must have responsibility for the child’s upbringing, be the biological father of the child or the mother’s partner, and have worked continuously for his employer for 26 weeks leading into the 15th week before the baby is due.
Parents are able to start taking parental leave as soon as their child is born, or as soon as they have completed the one year’s qualifying period with their employer. Mothers can take parental leave immediately after a period of maternity leave. The employer may limit the number of weeks that can be taken in one year to four weeks per child. Parental leave is normally unpaid. Family emergency You have the right to take time off work to deal with an emergency involving someone who depends on you. You cannot be penalised by your employer for taking the time off, providing your reasons for taking it are genuine. Your partner, child or parent, orsomeone living with you as part of your family can all be considered as depending on you.
You can only take time off if the situation is an immediate emergency, rather than something of which you have had advance warning. There is no legal obligation for your employer to pay you for the time you take off and you must tell your employer as soon as possible why you are away from work and how long you expect to be off.
More advice
For full and comprehensive advice on your rights and the extra financial help available to parents who work visit the website for the Department for Work and Pensions www.dwp.gov.uk ACAS (Advisory, Conciliation & Arbitration Service) offers a free confidential advice service to anyone seeking information on employment matters. Helpline: 08457 474747 www.acas.org.uk
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HAPPY 40th BIRTHDAY TO US! We are very pleased to say Heartline will be celebrating 40 years this year and we’d like to invite you to our party at the London Wetlands Centre on 31st August 2019. Heartline Association was formed in 1979, making the Heartline name 40 years old and continuing to be a valuable support to our members. We wouldn’t be here without you and the former Trustees who have ensured that Heartline grew and continues to provide the services our members need and want. We’re having a party from 12.30pm to 4.30pm at The London Wetlands Centre, Barnes, London and have 150 tickets to offer and we’d love you to enter a draw to join us there. We’ll have an entertainer, games, guided tours of the centre, pond dipping and, of course, cake! We’ll also be inviting some former Trustees to help share our special day.
How to enter
Please email Lauren at intouch@heartline.org.uk if you’d like the chance to attend, or write to her at 3 Platanus Mews, 14A Church Street, Epsom, Surrey, KT17 4QB. Please provide your name, number of tickets requested, (direct family members only please), and contact details by 15th July and we’ll place all entries into a draw on 20th July. We’ll then let you know if you’ve been successful (as soon as possible after the draw). Looking forward to seeing you there!
Kevin, Jane, Natalie and Val Heartline Families Trustees
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Dear Heartline Family,
We hope you enjoy reading our new Heartline Families’ Newsletter and may have an interest in providing a story or update about your family, or area of interest for a future edition. We are working to improve how we share news and information with our members. If you’re reading this from a newsletter that you received in the post, we don’t have an email address for you - we’d like to have one to help improve how we communicate with you. We may not have an email address for you because you have changed personal or work email addresses or you didn’t have one when you joined Heartline originally. An email address also helps Heartline manage resources by reducing printing and postage costs, helps Heartline ensure you receive the newsletter efficiently and also helps ensure we can share details of events and opportunities, sometimes at short notice with you such as the PGL activity weekends or our proposed 40th birthday party this year. We would be grateful if you could update your email address, (if you have one), with Lauren our administrator, by emailing her at intouch@heartline.org.uk. Thank you. All members, please also advise of her of any changes including surnames, address, contact numbers, diagnosed condition/s and names and ages of siblings. This all helps us ensure we can provide our benefits to you efficiently. You may also wish to ask to register for access to our closed Facebook page as a Heart line Families member. Families share details of their children’s progress, (which we ap preciate may not suit every family), and we can share details of events and discussions regarding their planning. If you don’t have an email address or do not wish to be contacted by email, that is of course fine, and you don’t need to do anything. You will of course continue to receive our Newsletter by post as usual. Finally, we have two Trustee positions we are recruiting for, which you may not have heard about. These are Fundraising Trustee and Clinical Lead / Volunteer. We will also be recruiting a Safeguarding / Governance (can be separate or joined) as soon as we can. If you are interesting in supporting Heartline’s continued growth, please email myself, Kevin Ford, Chair of Trustees at chair@heartline.org.uk. Thank you for your time and I hope you enjoy this edition of our Newsletter. Regards,
Kevin Kevin Ford Chair of Trustees
Keep in Touch
Do we have your most up-to-date contact details? Please complete the form on the website to update us, or email intouch@heartline.org.uk or contact us by using the details below.
Medical Terms
A full explanation of the medical terms used in articles and features in this edition of the Heartline magazine can be found at: www.heartline.org.uk/news/saywhat
Heart Children Book A practical handbook for parents‌
For the past 30 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.
How to get your copy
Single copies are free to Heartline Families. Single copies ÂŁ7 (plus P&P). Please contact intouch@heartline.org.uk for information about buying your copy.
www.heartline.org.uk Email: intouch@heartline.org.uk www.facebook.com/heartlineuk www.twitter.com/heartlineuk
Tell Your Story
Heartline Families is edited by Natalie Persoglio. Please send articles, photos and feature ideas by email to trustee1@heartline.org.uk
Heartline magazines are also available on our website Heartline Families is a Charitable Incorporated Organisation. Registered Charity Commission No: 1153442
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