Winter newsletter
2020
Winter 2020 Happy New Year!
Happy New Year 2020 to our families!
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Meet our families Hi, I’m Hayley Johnson This is me and my little boy. I am 30 years old and was born with Tetralogy of Fallot. At one year old I had my first surgery where I was saved three times. I had my surgery at Killingbeck Hospital in Leeds. I had my boy when I was 27 years old after being told I couldn’t have children. I suffered a stroke in 2009 at the age of 21 - I’m now fully recovered. I will need more surgery in the future but, for now, I am living my life for my boy. My boy was born perfectly fine with no heart conditions at all
Hi, this is Cameron Cameron is eight years old. He has Tetralogy of Fallots with Absent Pulmonary Valve Syndrome.
Hi, this is Tilly
Tilly has Severe Ebstein’s Anomaly, non compaction left ventricle, and a stroke. Tilly has had a BT shunt, bi directional Glen and Fontan. She is symptomatic and her saturations are in the high 80s.
Terms medical terms Medicalnatio n of the
A full expla es in this edition used in articles and featur can be found on of the Heartline magazine the website.
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Heartline Families www.Heartline.org.uk
FREE Wetsuits For Heart Children! Heartline offers a free wetsuit for a child who is registered on our database. All applicants will be confirmed by our office before wetsuits are ordered and sent out. To request your free wetsuit, you must be a family member of Heartline Families, which is also free and can be done by visiting the website. Once you have been accepted and processed as a member, you can order your wetsuit by completing the form on the website at www.heartline.org.uk and your child will be splashing around before you know it.
Tips for the 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 you’ve received it. - If your wetsuit hasn’t arrived within three weeks of your submitting the online form, please email us at intouch@heartline.org.uk 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!
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Heartline Families www.Heartline.org.uk
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I would walk 500 miles... for Heartline Familes! The Baxters Loch Ness Marathon is quite possibly one of the most stunning marathons in the world. With spectacular scenery, fantastic atmosphere and a truly memorable experience – it’s no wonder it was voted in the top 10 UK marathons by Runner’s World readers in 2016 and is on the bucket list for many runners from around the world. Heartline Families’ member Andrew Fox decided to take on the challenge on behalf of his sister who was born with heart conditions. Here, he tells us about his training and challenge. Last summer I signed-up to run my first-ever marathon... in Loch Ness of all places. Having had a sister who was born with a congenital heart defect, there was only going to be one charity for which I would run the marathon and that’s Heartline Families. When we were younger we had the benefit of going away and having caravan holidays together as a family provided for us by Heartline. The holidays were a much-needed and welcome distraction from all of Faye’s operations and hospital visits. After a somewhat difficult 16-week training programme, late night runs, early morning runs, plenty of muscle aches and ice baths later, I was near enough ready to take on Loch Ness and all its hills. Lining up in the rain and wind, together with 5000 other runners we were treated to bagpipes and a rendition of The Proclaimers… I definitely felt like I had run 500 miles by the end of it! After 26 brutal miles and what felt like three separate mountains, I finally made it to the end of the course in 4 hours and 14 minutes. The total amount raised is £1500 - and counting - so far in the process! I would like to thank everyone who has donated so far to a very worthwhile cause! From everyone at Heartline:
Thank you, Andrew!
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Heartline Families www.Heartline.org.uk
Grief for the loss of a heart child With thanks to the Children’s Heart Federation
When we lose someone we deeply love a reaction occurs which is both painful and disturbing. These experiences of loss and sorrow we call grief. when and how we grieve is different for each of us.
Expression of feelings
We may be tempted to try having a stiff upper lip. This is not the best way to deal with the pain of grief. We cannot avoid deeply experienced suffering, and grieving is the way to express these feelings.
Grief and other people in your life
Grief can show itself in many aspects of your life. One of these aspects might be the social side of your life. All those with whom you come into contact will be altered by your grief. Your family, friends and neighbours may feel awkward, embarrassed or inadequate. To reduce their discomfort they may try to avoid you or make sure the contact is as brief as possible. In trying to comfort you they may say things you find very hurtful and unhelpful.
Help is out there
You may find it hard to get on with people as your sadness overshadows all relationships. You may feel isolated and alone and believe that no-one understands how you feel. At such times try calling the Child Death Helpline, 0800 282986. The line is open Monday, Wednesday and Friday 10-1pm, and every evening from 7 – 10pm. The line is staffed by bereaved parents, and they welcome calls from anyone touched by the death of a child, whatever the relationship.
Physical effects of grief
Another aspect might be its physical effects. The need and yearning to touch and hold the child you have lost can be very great. You may feel you are falling apart with no interest in anything or anybody. You may find you have nightmares or are unable to sleep. You may find your need for physical contact and sex is altered Sweaty palms, headaches and stomach pains are all common to the bereaved.
Psychological effects
Grief can also affect you psychologically. You may have feelings of fear, frustration and anger, or feel guilty and continuously blame yourself or other people. Many people can’t stop thinking about the events that led up to the death while trying to see how they could have altered the outcome. You may have feelings of ‘if only’ – if only I had done this, or had not done that.
Give yourself time
You may want to keep visiting the hospital where your child died, because you feel close to them there, or some other place of significance. Grief makes it difficult to think clearly and it’s not wise to make major decisions such as changing job or moving house until later.
Protecting siblings - don’t hide your grief
Grief may affect all members of the family and while it is quite natural to try to protect one’s children from the death
of a brother or sister they will miss them and need help to grieve their loss. They will notice the distress of their parents and will be affected by the change of routine in the household. You may find it hard to understand their reactions. They may seem very matter-of-fact or even unconcerned. Often they will be difficult and naughty. Don’t feel you need to hide your grief from your children. Sharing your distress with them may make it easier for them to express their sorrow. Listen to what your children try to tell you. They often express their feelings in the games they play, or in what they write or draw, rather than in words.
Explaining what has happened
Tell them as clearly as you can what you know to have happened and try not to tell them things you do not believe yourself. Tell them their brother or sister has died, and not ‘gone away’ or ‘gone to sleep’ because these explanations can confuse and frighten. Children know much more than adults realise and their imagination can be more frightening to them than the reality. If children wish to see the child who has died at the hospital or in the coffin this might help them and should not necessarily be discouraged.
Feeling responsible
Children often may feel guilty or responsible for what has happened and need reassurance that they are not responsible and that they, or you, will not disappear in a similar way. They need more reassurance and love than usual at this time. This also helps to convince them that they are as important and as loved as the child who has died. If you feel you are unable to cope with them then ask someone close and special to them to help and to be with them at the funeral. Do not forget to inform the school and other groups to which they belong what has happened in case they choose to show their reaction there rather than at home.
Feelings of overwhelming sadness
You may well have moments of depression and overwhelming sadness, but working through your feelings and the passing of time will help you to remember the happy times with your child. Anniversaries, birthdays or some special reminder of your child will probably cause these feelings to reoccur for a little while. The process of recovery is much longer than most people expect, but eventually there will be a time when you can look forward again. In the meantime none of the experiences described is unusual. You may feel you are going mad but you are not. The support of the family, friends, local support groups, your and GP or helplines can be invaluable. Never be afraid to contact someone to talk about how you are feeling, it may help.
For help and support:
SANDS: Stillbirth and neonatal death charity. www.sands.org.uk. Tel: 0808 164 3332. Email: helpline@uk-sands.org.
Heartline Families www.Heartline.org.uk
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Meet our families Hi, this is Lucy Shaw
Lucy was diagnosed with Tetralogy of Fallot’s at my 20-week scan at Nottingham city hospital. We were referred to Glenfield Hospital for a more detailed scan. As with many heart babies, we had regular scans right up until she was born. I was induced at 40 +2 normal delivery. Lucy was pink when she was born. I had a cuddle with her then she was transferred to neonatal. Next day she was taken for a scan at Glenfield to confirm her heart condition. At just over four months we were transferred to Glenfield for her operation and everything went as planned. Lucy is now 15 years old and has started to show signs of maybe needing her valve done.
Hi, this is Hayley Johnson Hayley is from Barnsley. When she was born in 1988, she was taken to Killingbeck Hospital. It was here that it was discovered that Hayley needed heart surgery. Hayley’s parents were told that her arteries were the wrong way around and that she would need surgery. In 2009, Hayley suffered a mini-stroke and she was put on warfarin. With her heart in failure, Hayley had a little boy through C-section in 2015. Hayley is doing well on a variety of medication.
Hi, this is Mia Persoglio Mia was diagnosed with a heart condition at her 20-week pre-natal scan. She was moved to Alder Hey Children’s Hospital PICU when she was born. She was diagnosed with a coarctation of the aorta (repaired at age five weeks old), multiple ventricular septal defects (repaired at 3 months and five years old). At three months old she was one of just 50 children in Europe to be fitted with the Flowatch pulmonary artery band. Mia is healthy and well with no medication. She is now 10 years old and loves life.
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Heartline Families www.Heartline.org.uk
The First Breath In her new book, The First Breath, Heartline parent and author, Olivia Gordon, tells the story of how modern medicine saved her son’s life, and his open heart surgery. Joel’s heart troubles began as a premature baby in neonatal care, when he suffered from supraventricular tachycardia and abnormal heart rhythms. Cardiac surgery at the age of four, for an atrial septal defect (ASD) – the commonest congenital heart malformation - was Joel’s fifth operation. He has a genetic condition called Noonan syndrome, which is often accompanied by heart problems.
Surgery in utero
Joel had a shunt placed into his chest in utero, and major stomach surgery as a neonate, followed by two more stomach operations aged two and three. But of all the operations in those first years of Joel’s life, it was the open heart surgery which made our friends look worried – a heart condition strikes people as the most fundamental health problem of all. In fact, ASD surgery is a ridiculously basic operation for a heart surgeon, but, of course, for the patient and those who love them, it is anything but basic.
Like swiss cheese
In Joel’s case, there wasn’t just one hole in the heart. His atrial septum was punched with multiple holes, like Swiss cheese. Because of the particular structure of his heart, it had to be fixed with open heart surgery – cutting the chest open, stopping the heart while maintaining circulation on a bypass machine, and sewing the hole-filled septum shut.
Two of the most difficult moments
Throughout Joel’s operations, I found the same two moments the most difficult. First was what happened in the anaesthetic room. The forced jollity as my husband Phil and I faked smiles and upbeat voices to keep Joel calm as we carried him down the corridors towards it, his tiny unsuspecting body shielded only by a thin, brightly coloured hospital gown. Later he rode on Phil’s shoulders and, before heart surgery, blithely on a red toy motorcycle.
Bubbles as distraction
We would enter the little anaesthetic room through one door and see the double doors opposite that our son would go through next, the assembly line leading to the operating theatre. The kind – always kind – anaesthetist would immediately take control. There would be bubbles blown by a nurse, jokes, anything we could think of to distract Joel as he sat on my lap, piping up: ‘I don’t like this room.’ As soon as the plastic mask came close to Joel, hissing its alien, unnatural fluorescent pen smell, he instinctively recoiled. Joel was too young to understand, and it was his lack of understanding which seemed the worst betrayal of his trust in us, his protectors.
Give him a kiss and put him on the bed
‘Quick as you like, put him on the bed,’ the anaesthetist would say, gently but firmly. ‘Give him a kiss, we’ll take care of him, we promise.’ Joel’s body would be lifted onto a
gurney, and I would turn back to take one last look, take in the bustle already beginning around him. The door would swing closed behind us and, awkwardly trying to hide my emotion, I’d be hugged by a nurse, and led away, to wait for news.
‘Where am I?’
The second difficult moment was when Joel regained consciousness. It was not just the sight of his little body covered in strange drains and tubes. It was that he was too young to understand why he was in pain. Every time he came around, he whimpered. I could feel his thought: ‘Where am I?’ After the heart surgery, which thankfully went smoothly, Joel woke up in cardiac intensive care - a quiet place, rather than full of shouting and panic as I had always imagined on a ventilator. The only mark on his chest was a surprisingly neat narrow plaster, but he had a chest drain, and various other wires attached to him. Joel started trying to turn from lying on his back and tugging at the tube in his throat. Suddenly, an alarm sounded.
The alarm was for Joel
It was only when I saw a crash team of doctors and nurses sprinting to Joel, with a defibrillator ready to shock his heart, that I realised the alarm was for him. To make way for the doctors I backed out of the room, shaking, an equally confused junior nurse putting her arm around me. All I could see was a crowd of doctors holding a doll-small boy upright over his bed.
The emergency was over
Minutes later the emergency was over, the doctors smiling and walking away while my family stood, aghast. Eventually, a nurse explained. Joel had managed to pull the ventilator out of his throat; it had got stuck halfway. He had stopped breathing and his oxygen level had dropped, leaving him blue. Now the doctors had got it out, and he was breathing well with a little oxygen mask on the sheet beside him.
Bouncing back like only a child can
For adults, open heart surgery is massive. After a bad night in high dependency, Joel bounced back from major surgery as only a child can. His operation was on a Wednesday.
Heartline Families www.Heartline.org.uk
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By Saturday, he was in his pyjamas pedalling a tricycle in Great Ormond Street Hospital’s play centre, and that evening he was home. In his frailty for the next few weeks I had a glimpse of him as an old man rather than a child, yet his abiding memory of this last operation is, thankfully, not of pain but of riding the red motorbike.
The extraordinary tale of heart surgery
In writing The First Breath, I set out to investigate how modern medicine saved my child’s life. The book not only tells my family’s story, but also the stories of other heart families, including the story of a baby with Tetralogy of Fallot, and gives a heat surgeon’s perspective, too. It tells some of the extraordinary history of children’s heart surgery, and reports from the operating theatre at GOSH on an open heart operation.
Emotional impact of hospital experiences
I also explore the long-term emotional impact of early hospital experiences. Joel is now eight and although he will always need cardiac check-ups, his heart is strong and healthy. Now he is old enough to understand that he has had several operations, but I am not sure how he (and I) will ever process all he has endured. Joel had exemplary medical care - and a lot of play therapy before his heart surgery.
‘White coat’ syndrome
But as is common and understandable for children who start their lives with months in hospital and multiple operations, he has ‘white coat syndrome’ – a fear of doctors and nurses doing tests. When we go for his cardiology echos, he asks for reassurance that it’s not another operation. Even having his blood pressure taken is stressful for him now, and at such times I tell him ‘You’ve been through so much worse’.
Proud of his scars
But of course, those ‘worse’ experiences are the reason why he is now afraid of a nurse touching his arm. I think Joel, who had to be brave before he understood what bravery was and when he really had no choice, can be very proud of his scars. The First Breath by Olivia Gordon is published by Pan Macmillan and is now available.
Praise for The First Breath Fascinating and moving. (Adam Kay, bestselling author of This is Going to Hurt) Excellent . . . A serious journalistic investigation into foetal and neonatal medicine . . . reads like a thriller. (The Times) Beautifully and clearly written and immensely touching...A great storyteller…[Gordon makes] us feel the great and risky adventure of surviving a difficult childhood and becoming a person: and the linked one of being a parent. Endlessly subtle…a wonderful, intelligent writer. (Maggie Gee) Moved me to tears (Professor Stuart Campbell, foetal medicine pioneer) A compelling and uplifting book. (Heart surgeon Professor Stephen Westaby, bestselling author of Fragile Lives and The Knife’s Edge)
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Heartline Families www.Heartline.org.uk
Meet the twins! The former area contact for Essex, Daphne Harvey, wrote to us to let us know how pleased she is that we’re introducing a new area contact network (more about this next edition). She was an area contact when her twin daughters were children in the 90s.
‘I was area contact for Essex for the whole of the nineties. We use to meet once a month in my home, hold a summer picnic and Christmas party. I arranged fundraising and offerered support over the telephone and contact for those who lived near each other. With the help of another member we held coffee evenings at the Royal Brompton monthly too. I believe it helped a great deal through troubling times. We were able to have time for ourselves without the heart children at our monthly get togethers. In the photo (below) you can see my twin daughters Zara and Zoe now aged 32. Zoe (on the right) was born with multiple VSDs, had a pulmonary banding at four months old and open heart surgery at three and a half years old. In Oct 2018 she was fitted with the new micro pacemaker that sits in the bottom chamber of her heart. She has led a very active and full filling life and was married in Aug of this year. Zoe is now looking forward to becoming an auntie to Zara’s child due in Apr 2020.’
A fond farewell to our Val!
It’s a fond farewll to one of our lovely trustees, Val Thubbron. However, we are pleased that Val is keen to continue to be around as much as she can on our closed Facebook page.
Val said: ‘I will miss being a trustee, and want to say that whoever takes my place will be welcome to contact me if I can be of any help to them.’ Val has been a member of Heartline Families and formerly Heartline Association for nearly 20 years and has been a trustee and or forum/Facebook mderator for many of those. Val has an exceptional ability to empathise and understand the needs, wants and issues of being a parent of a heart child, and we’d like to express a huge thanks to her. We are sure all our members who know Val would like to say ‘thank you’ personally, but we’d like to be the first: Thank you Val. In the meantime, the Chair, Kevin Ford, will be picking emails and action from the familysupport@heartline email address. We will of course be seeking to fill the key role of Family Support Trustee in due course, which will have lead responsibility for the Area Contacts Network.
Heartline Families www.Heartline.org.uk
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Warrior William’s Story By Caroline Dainty William was born on the 15th November 2015. He is the youngest sibling of Grace (age 9) and Ellie (age 8). He was born at the John Radcliffe Hospital, in Oxford, after a normal delivery. He came home to RAF Benson where we live, as his dad worked for 33 Sqn on Puma Helicopters as an engineer.
Just like any other baby
At first, he seemed like any other baby but over the coming days we noticed his breathing just didn’t seem right. We mentioned his breathing to staff at the local maternity unit where we were visiting most days as his jaundice was not improving. We were told this was due to me ‘not positioning correctly whilst breast feeding therefore, he was spilling off the breast and having to work hard hence his heavy breathing’. He also had a tongue tie corrected during those first few days.
Heart murmur
On the 1st December, (I remember the date as it’s my birthday) after seeing my health visitor and discussing his breathing I made a GP appointment for later that day. The GP listened to his heart and confirmed a heart murmur.
‘Medium to complex condition’
We were sent to the John Radcliffe Hospital (JR) and received unbelievable treatment and service. We didn’t need to wait, and we were told very quickly, after a few tests, that William had what they described as a ‘medium to complex heart condition.’ William has a Double Outlet Right Ventricle (DORV) and Ventricular Septal Defect (VSD). Also other VSD. Plus another small VSD and a leaking mitral Valve
A plan is made for surgery
William was admitted to the JR and we spent time in there talking about his condition with consultants and the specialist
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Heartline Families www.Heartline.org.uk
nurse team and a plan was made for surgery. William was meant to get to 5kg in weight before surgery, but we didn’t quite make that weight as his heart was having difficulty coping. We had a feeding tube fitted at 8 weeks after losing weight and surgery for scheduled for 14 weeks. We spent lots of time in and out of hospital at the JR.
Long surgery
William had open heart surgery at Southampton General Hospital to repair the VSD and DORV. The operation lasted twice as long as planned because the repair came a party during the operation. William seemed to recover very quickly but after approx 7-10 days from leaving hospital, I noticed his breathing changing and he needed a hospital transfer back to Southampton for another open heart surgery at 19 weeks.
Another ten hours of surgery
After another ten hours in surgery we were told that the Tricuspid Valve had been damaged during the operation and had also been repaired. We were also told that the value was performing fair and may need replacing in the future. The value may not be able to cope as William grows.
Your Say!
We asked our heart families for their advice in helping to prepare a little one for surgery.
Contact the play therapists in advance, they are so useful in making things less scary for the children. Jeanette Jennings I wish I had taken more photo including her chest before it gained a scar. Jenny Payne Take lots of photos, be honest but only tell what they need to hear. we told our 3.5 year old he had a poorly heart and the doctors were going to fix it. (We said) The bloodtests would hurt but only for a second and he would have more energy to have swimming lessons and to play football once we would be able to go home. Marije Kootstra
Delighted at how well he’s doing
William generally gets a lot colder than his peers plus he does get tired and out of breath. William also seems to get any childhood illness much worst than his peers. He still isn’t a great eater or sleeper, but we are delighted at how well he has come on.
Keep them involved if you can, I’ve never had a conversation with the doctor without my child in the room, I believe whatever age they are they will pick up info as they go, making it easier for them and for you as they get older. If you try to hide things they pick up on it and worry. If i’ve been told anything scary then I’ll put it in unscary/ simple terms for my child. I have to say too that kids are amazing, they can cope with a lot more than we give them credit for and normally cope better than us! Ruth Stevens We found a few books to help but none that were as relevant as the Heartline story about baby bear. Victoria Richardson When Ellen had her fontan aged 5, the best advice I got came from Lynnne Carney. She advised to tell Ellen she would wake up after the op with a ventilator in (breathing tube), to say it was completely normal. I said it was helping her to breath so her body could rest. Jane Van Wyk We had a Molly’s Dolly, which we used to show Mia that she wasn’t on her own. The doll had all the same tubes and wires that she did. As the wires were taken away from Mia, the same wires were taken off the doll, that way she could see she was getting better and she wasn’t alone. The doctors and nurses were amazing in treating the doll in the same way and with the same procedures. Natalie Persoglio
Relieving the pressure
Recently William was started on a blood pressure medicated, Enalapril Maleate to try and relieve some of the pressure on his mitral valve. This is because William now has some worsening of his aortic regurgitation on the mitral valve. The purpose of the Enalapril is to try and defer a mitral valve replacement operation in the future.
Heartline Families www.Heartline.org.uk
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