Autumn newsletter
2019
Happy 40th birthday us! We are celebrating our 40th birthday this year! We wouldn’t be here without you and the former trustees who have ensured that Heartline grew and continues to provide the services our families need and want. We’d like to thank each an every one of you for your support and engagement over the years. We’re pleased to say that the coming year is filled with lots of new projects and benefits for our families and we’re looking forward to sharing them with you. Not least of all is the revival of a much-loved service, the area contacts network. Watch this space for an official introduction to the fantastic volunteers who will be looking after your areas and helping to set up events and meet-ups. Good things are ahead for Heartline Families!
FREE Wetsuits 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. See our website for details about how to order your FREE wetsuit. See more on page 2.
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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
Swim time!
Summer may well be just a distant memory, however, there’s still plenty of time to get your flippers wet and go for a swim. For heart children the cold water at a local swimming pool can sometimes make it impossible to go swimming, which is why we provide FREE wetsuits for our the heart children in our families. These wetsuits help keep the warmth in, meaning that your hear child will be able to swim for longer without getting too cold. You need to be a member of Heartline Families to claim your wetsuit, which is also FREE! Please visit our website and complete the FREE wetsuit form and your child will be splashing around before you know it!
Tips:
Best-fit wetsuit If your child has a heart rhythm problem, check with their cardiologist before taking him or her swimming – a few types of heart rhythm problems can become dangerous when a child enters the water. - Size – Try not to order too far ahead of the first intended use of the wetsuit, as your child may have a growth spurt. - Under 4, your child’s current clothes size is a good indication of the best fit for a wetsuit, unless he or she is big for his or her age. - When the wetsuit is delivered please email intouch@heartline.org.uk to let us know its arrived safe and sound. - If your wetsuit hasn’t arrived within three weeks of your submitting your application, please email us so that we can sort it out quickly. We would love to have pictures of children benefiting from their wetsuit to show our kind donors how much they are enjoyed!
Why:
Do heart children get so cold in the water? Heartline’s Hazel Greig-Midlane explains the benefits of wetsuits and exercise for children with heart conditions. “Many heart children have not been able to enjoy playing or exercising in water. This is sometimes because their poor circulations cause them quickly to become cold even in heated pools. There are a variety of medical consequences of heart conditions that lead to this lack of control of their body temperature. In CHD, the heart is already working harder to maintain sufficient oxygenation and the body’s core temperature. The cooling effect of water increases the effort needed. Often the child will feel uncomfortably cold with shivering and blueness after only a few minutes in even warm water. And sometimes parents think their child is not ‘allowed’ to play in water because of their heart condition. Swimming is exercise heart children can benefit from and (just as important) enjoy, even those too breathless for physical games, or on medication that excludes them from contact sports. Some children are very conscious of their scars from open heart surgery that make them different and so reluctant to remove their clothes in front of others. The provision of a wetsuit gives them a freedom to participate in physical and social activities they would not otherwise have, even just having fun on the beach if not swimming or paddling in the sea. Careful exercise may improve their medical condition and certainly assists in helping them combat infectious illnesses.”
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Heartline Families www.Heartline.org.uk
Heartline Families www.Heartline.org.uk
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Tube feeding children with heart conditions Why are children fed by tube?
Some babies and children with heart conditions may need to be fed through a tube because they are not able to get enough calories by eating normally. There are a number of reasons why your child may not be getting enough calories by eating normally. Make sure you fully understand why medical staff think your child needs to be fed by tube. Types of tube There are two types of tube. Ask the doctor or nurse what sort of tube is being used and why.
Children who are fed through a tube for a long time may stop associating the process of eating with satisfying their hunger. Letting your child have something in their mouth to taste while being fed through a tube will make sure they continue to associate the taste and presence of food in their mouths with the feeling of their hunger being satisfied.
Parents often find it very difficult to explain heart surgery and the resulting scars to very young children. The Children’s Heart Federation has come up with the idea of using Molly’s Dollies, a rag doll with surgical scars, to help explain scarring to children with heart conditions. These dolls can be used to gently introduce the idea of operations and scars to your child.
Nasogastric tubes (NGTs) are placed in your child’s nose and go down to their stomach.
You can help prepare young children and babies for a return to normal feeding by getting them to use their mouths lots. You can give young children things to suck or chew on and you can play games which involve your child blowing bubbles, making shapes with their mouths and so on.
Gastronomy tubes
Finding out more
The dolls are available free of charge if the order is endorsed by a healthcare professional, for example your Cardiac Liaison Nurse. They can also be purchase for a suggested donation of £24 (plus £2 postage if outside the UK). Download the application form from the Children’s Heart Federation website (www.chfed. org.uk) - to be completed by a healthcare professional if you’re claiming a free doll.
Gastronomy tubes are inserted through the skin directly into the stomach. This is done under a general anaesthetic.
A dietician or nurse will show you how to feed your child through the tube. Make sure that you are confident about doing this before you do it on your own.
Or to request an application form through the post call 01376 780 044 or email: info@chfed.org.uk.
Children with gastronomy tubes can eat normally as well as receiving food through their tube. The food that is put through the tube is a special formulation which your child’s dietician will prescribe.
The nursing staff will also explain how to care for your child while they are being fed by tube. Feel free to ask the doctors, dietician or nursing staff any questions you might have and let them know if you have any concerns or problems.
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Nasogastric tubes
Benefits of tube feeding
đ&#x;”š Giving children medicine through a tube is often easier especially as they will not taste it. đ&#x;”š You will know exactly how much food your child has taken in. đ&#x;”š Children fed with a tube will usually be able to take far more food. đ&#x;”š You can feed children continuously even if they are asleep.
Overcoming problems with tube-feeding Children who are being fed through a tube may feel left out at family mealtimes. Even if your child is not able to eat the same food as you, they are with the rest of the family at mealtimes. Try to give them something to eat at this time even if it is just a light
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snack. If it is not possible for them to sit with you, then make sure that you all spend time together doing other things, for example, playing games or doing jigsaws.
Molly’s Dolly: a helping hand for your heart child
Heartline Families www.Heartline.org.uk
With thanks to the Children’s Heart Federation.
Mia, 4, with her Molly Dolly who accompanied her through two of her heart surgeries.
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: - 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 email us at: intouch@heartline.org.uk
Heartline Families www.Heartline.org.uk
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When your baby has a potential heart condition
are any possible problems. The test is not invasive so your baby will not experience any discomfort or be at any risk from the test itself. What should I do in the meantime? You should receive a full explanation of the reason and timescale of the referral to a specialist. While you are waiting for further tests, you should feel able to contact your Health Visitor, GP and other medical professionals. If you have any concerns or questions do not hesitate to visit A&E or call 999 if your child suffers a sudden, dramatic or worrying change in their health.
Notes for your next appointment ... A space to note down any important dates, names, terminology, next actions or things you want to raise at your next appointment.
Five signs which might indicate an underlying heart problem:
Heart, rate being too fast or too slow
(normal range 100-160 beats per minute)
Energy, the child may be sleepy, quiet or falls asleep during feeds; What is your baby’s heart check at birth for? After your baby is born they should receive a range of examinations by a health professional to check for any possible medical conditions – ensuring they are detected early. Sometimes during the course of one of these examinations a medical professional may observe something unusual with your child’s heart or may suspect a problem. Common symptoms which may indicate a problem include: - A blue-ish tint to the skin shortness of breath tiring quickly; - Collapse or falling asleep during feeds; - Another common indicator of a possible heart condition a medical professional may detect is a heart murmur. What is a heart murmur? As blood is pumped through the heart it will create a certain sound, a murmur is simply an ‘extra or unusual’ sound. The extra sound is caused by tiny disruptions in the ‘normal’ bloodflow. There are two sorts of heart murmur; innocent and abnormal. Innocent heart murmurs are quite common in children and are no cause for concern; they are not an indicator of a heart condition. An abnormal murmur is an indication of some sort of condition which may
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Heartline Families www.Heartline.org.uk
require treatment. Murmurs are detected by listening to heart sounds through a stethoscope, so it will be impossible for a clinician to discern whether or not a murmur is innocent or abnormal without additional tests. It should be noted that a murmur is not a heart condition itself; merely a possible indicator of one. What can you expect to happen next? A more senior and experienced clinician will examine your baby next to further investigate these possible issues. Your child may be referred to a specialist or sent for further tests, initially it’s usual to carry out an ECHO (Echocardiogram). Many parents worry during this time, but only a small number of babies are born with congenital heart defects (between 0.4% and 0.9%) which require treatment each year; so it usually turns out that there was no need to worry. What is an Echocardiogram (ECHO)? An echocardiogram is an ultrasound test which scans to see how the blood is moving through the heart and the structure of the heart. This is a special image of the heart which shows all the chambers and working of the heart allowing the medical professional to look at the heart in detail. This scan will help them to see if there
Appearance, the child may be pale, blue or dusky grey in colour;
Respiration, the child may be breathing too fast or too slow (normally 40-60 breaths per minute);
Temperature, the child may be cold to the touch, particularly hands and feet. If your child has some of these symptoms you should tell your medical professional e.g. Health Visitor or GP as soon as possible. If you are unable to contact your health professional, then do err on the side of caution and go to A&E or call 999. Things to remember While professionals try to ensure you’ve understood what’s happening, we’d recommend that you keep a list of all your questions and concerns as you think of them; so that during your next appointment you don’t forget anything you wanted to raise. It’s also a good idea to record what was said so you can remember it later; including dates, names, medical terminology and next actions. Us the space opposite to make notes as you need to.
Heartline Families www.Heartline.org.uk
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Our whirlwind, Ioan
A life-loving boy
He loves his big sister and brother and follows them everywhere. He gets breathless easily and knows his limitations. Despite his tough start we wouldn’t change him for the world.
Heart Rhythm Specialists’ Directory Searching for a heart rhythm specialist?
Blood transfusions to help his body recover
He stayed there for two weeks undergoing CT scans, blood transfusions, and a course of two high dose antibiotics. I eventually got to cuddle him once his wee body had recovered and was as well as it could be without having surgery to correct the coarctation.
By Emma Griffiths-Brown Ioan, our third child was born during storm Doris, at home on the 23rd of February 2017. It was fabulous to finally have a home birth. I noticed a tongue tie within moments of holding him so readied myself for a feeding battle. I became a master of hand expressing and feeding him from a cup.
Speedy breathing
Once my milk came in I began pumping and feeding him with a bottle until he has the tie cut. Ioan was completely disinterested in feeding, he made no sounds other than his speedy breathing.
What is normal?
We questioned the midwife about both his feeding and his respiratory rate, her response was it’s ‘normal’. So we battled until day 12, at which point I had had enough. I called the GP’s surgery and they agreed to see us straight away.
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Heartline Families www.Heartline.org.uk
A murmur
We were in with the doctor for 2 hours, finally she told us she could hear a murmur and she sent us off to the local A&E. 8 hours later, Ioan was on a prostin drip, he and I were bundled into an ambulance and sent off to the cardiac ward at Alder Hey. After a lengthy echo with 3 different doctors he was diagnosed with a coarctation and other abnormalities. We were told it was an easy fix and surgery was set for the Friday morning.
Cardiac arrest
Unfortunately we were awoken on the Thursday by a cardiac arrest alert and his room filled with staff, we were thrown out! At 2 weeks old he has gone into cardiogenic shock and his organs were beginning to shut down. Ioan was sedated, intubated and put on all manner of drugs in CCU.
The Heart Rhythm Specialists directory highlights heart rhythm disorder specialists near you. The database houses a list of healthcare professionals, including doctors, GPs, nurses and cardiac physiologists, who have an interest in heart rhythm conditions disorders like atrial fibrillation, supraventricular tachycardia and sudden cardiac arrest http://www.heartrhythmspecialists.org/
A spiked fever
Not being one for the easy road, we signed all the paper work for surgery, due the next day, Ioan spiked a fever...another round of antibiotics. This time a urine infection! We thought it would never end! Finally at seven weeks old Ioan had surgery to correct the coarctation. Retrovirus may have kept him sedated for two weeks, heart surgery however only kept him in hospital for four days!!
So many tests
He is now on 6 monthly check ups, has had gamma scans of his kidneys and all manner of hearing tests all due to the affects of the drugs he was on in CCU. His aorta is not growing as it should so we are awaiting a catheter procedure and he will need some valves replaced as he gets older. This does not hold him back, he is an animal crazy, life loving boy that brings us so much joy.
Hea
Gabriela’s Story By Cherilyn.
stressful time for us and to anyone who has a diagnosis of congenital heart conditions as we all expect that our children will be born healthy. Although I was stressed I can clearly remember how professional and caring all of the staff were.
care of me after such a difficult couple of weeks.
Arterial switch surgery
In february 2008 Gabriela had the arterial switch operation another long wait. We were hoping that this would be the last surgery for a while. However this was not to be she developed a right ventricular outflow obstruction. They tried to fix this twice by cardiac catheter but this was not successful and she went on to have a fourth open heart surgery. This was the shortest of her surgery’s but was not any less stressful.
Giving her time to grow
The doctors could not view Gabriela’s heart clearly and she needed to have an MRI under anaesthetic. It was clearly explained to us why the MRI scan was needed and the risks that were involved. Following the MRI, it was decided that she would have surgery to fix her aorta and to place a pulmonary artery band (PAB) this was explained to us clearly and we were told they were doing this procedure to giver her the time she needed to grow so that all of the other repairs could then be done. The cardiac liaison nurses came to talk us through any concerns and an intensive care nurse came to take us for a look around the intensive care ward.
A brave young lady
The decision for surgery Gabriela was born on the 26th August in 2007 with an undiagnosed transposition of the great arteries (TGA), double outlet right ventricle (DORV) and an interrupted aortic arch.
A devastating diagnosis
At four weeks old and after few visits to the local doctor with some weight loss worries, we were sent to our local hospital where we were given the devastating diagnosis that she had congenital heart conditions. On 28th September 2007 she was rushed to Bristol Children’s Hospital onto Ward 32. Gabriela had been taken in an ambulance, understandably she was very sick and therefore we were unable to travel with her. We arrived at Ward 32, to the news that there were more things to be concerned about than we’d previousy thought. During the original diagnosis, the medics had been unable to view all of the heart and we found out here that there was more wrong.
Diagrams of her heart
On arriving on Ward 32, I was greeted by a wonderful nurse who will stay in my memory forever. She was kind caring and compassionate and immediately helped me to feel at ease. The doctors clearly explained everything to us giving us diagrams so that it was easier to understand. It was an incredibly
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Heartline Families www.Heartline.org.uk
The surgeons came to speak to us (two of them were going to do the operation). They clearly explained everything to us including the terrifying risks and mortality risks. The intensive care professor also visited us to explain what would happen when she was out of surgery. All teams were kind caring and gave us full explanations and answered our questions.
Good days and bad days
On the 4th October that year, Gabriela had her surgery and came into intensive care after nine long hours of waiting. Again things were clearly explained to us and she was cared for by professional caring compassionate staff. During her stay she had her good days and her bad days, and she was always well looked after. Following her stay in the paediatric intensive care unit (PICU) she was transferred to the ward. Again the staff were always caring and supported me to care for my child. She was monitored very closely and I can clearly remember the staff coming into the room to check on her at the sound of each alarm.
Support from the ward nurses
If I was ever concerned the wonderful nurses of Ward 32 listened to me, reassured me and acted on any concerns. We were discharged back to our local hospital and eventually home where I continued to tube feed her with the support of our community nurse.
A set back for Gabriela
It was at this time that Gabriela became very unwell and collapsed. She was rushed into Accident and Emergency at our local hospital where she had oxygen levels of 50% she was ventilated and Bristol Children’s Hospital was contacted. At the initial contact there were no beds at Bristol children’s hospital and there was talk of sending her all the way to Glasgow! I am so grateful that they were eventually able to arrange a bed for her in PICU at Bristol.
Low oxygen levels
When we arrived at Bristol, Gabriela’s oxygen levels had dropped to 20% even though she was ventilated. They tried nitrous oxide but, as it did not bring her levels up, she was deemed an emergency. My child needed surgery and she was rushed in to have a BT shunt and a septectomy. I learnt after her surgery that due to her being an emergency operation and being so unwell other children had their operations postponed.
Two eventful weeks
After two very eventful weeks including respiratory arrest and needing to be re-ventilated, we were transferred back to Ward 32. et again, the nurses were caring compassionate and worked incredibly hard not only to look after my child but to take
Gabriela will celebrate her 12th birthday this year and we are incredibly proud of the young lady she is becoming. Every day she inspires me with the energy she puts into everything she does. Gabriela recognises that she does not have the stamina and may not always win races like other children will, but that does not stop her from trying. Gabriela loves trampolining, dancing, playing the piano and swimming. Gabriela does not let her condition hold her back which is a true inspiration. Going through the four open heart surgeries was the most stressful times of our lives however we got through it and now enjoy every moment.
Terms used We know that it’s easy to get lost in a haze of medical terms and words in the heart world, so we have a page on our website, which helps explain the meaning of terms used in some of our stories and that you may come across in relation to your own child’s heart conditions. Please visit: www.heartline.org.uk/news/saywhat
Heartline Families www.Heartline.org.uk
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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. Also, if you prefer to receive an email version of this newsletter, please let us know via the above email address. Thanks for your support.
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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