Heartline Raising Awareness for Children With Heart Conditions
Pictured left to right: Hazel Greig-Midlane, MP Paula Sherriff and Heartlineâ€™s Sheran Taylor At the end of last year, Heartline Families joined with other charities supporting the families of children with heart conditions, to urge MPs to improve access to Disability Living Allowance (DLA) for those living with congenital heart conditions. Representatives from the charities, including our former chair, Hazel Greig-Midlane, spoke to some MPs and peers. The charities raised concerns that some patients may be being turned down for DLA partly because CHD is not given a place in the guidance used by assessors. The MPs and Peers were asked to support changes to the DLA Assessors Guidance to include childrenâ€™s heart conditions. Tom Elliot MP, Philip Hollobone MP, John Howell MP, Baroness Walmsley, Peter Bottomley MP, and Dominic Raab MP were in attendance.
MPs are powerful advocates, and we hope the event will lead to greater consideration of our concerns. We hope to hear more from MPs on this in the coming weeks and months and will keep our members posted. Twelve children each day in the UK are born with heart defects, others acquire them due to viruses. Outcomes for these children have never been better with surgical advances, but they need supervision, care and medication to allow them to live longer lives. Many also have mobility needs. A petition is currently available to sign, which supports this work. Once it reaches 10,000 signatures, the Government will provide a formal response https://petition.parliament.uk/ petitions/170673 or http://bit.ly/2ioxhTD.
A mother's heart story
He went out the room to call a cardiologist. Our whole world was turned upside down. We made a call home to say we had been delayed. Before long the cardiologist came, and within an hour or so, after standing ready to go, we were told that our son needed life-saving open heart surgery.
Our worst day
He had something called Coarctation of the Aorta, a Subaortic Ridge and a Ventricular Septal Defect (VSD). I was told I couldn’t feed him anymore, he was hooked up to various drips, put in an incubator, and we were transferred to Great Ormond street. The day we were told he had a heart condition was the worst day we have ever experienced - full of the unknown and terrifying to be thrown in so unexpectedly. One minute on our way home, to the next in a daze walking into cardiac critical care.
The first of three heart operations
Our son was operated on the next day. It would turn out to be his first of three open heart procedures. His first operation was to fit a Pulmonary band to stop excess blood reaching his lungs and to repair the Coarctation of his Aorta. His second operation was to take off the band and repair his ventricular septal defect and operate on his Subaortic Ridge. The third was to re-repair his VSD, though this time with a patch, and again a resection of the Subaortic Ridge which had returned.
Our son, Eitan, was born in April 2006 at the Portland Hospital. My pregnancy was normal, the scans were normal, and I had no reason to think there was any kind of problem with my unborn son. I had an Elective C-section when I was 38 weeks pregnant because of medical needs. Everything seemed fine after he was born, apart from I noticed that he seemed to breathe really quickly. The midwife explained it away, telling me that I had “just forgotten that newborns breathe fast.” She promised she would keep an eye on him.
In the morning after he had spent some time in the nursery, the midwife came in and said that I had been right. The nursery staff had been a little concerned about his fast breathing during the night, so they had contacted the on-call paediatrician to take a look at him. They had taken some bloods, suspected an infection and so started him on IV antibiotics. The problem was his veins kept collapsing everywhere they tried. He was also very jaundiced. At that point, he seemed to be doing okay. We had previously labelled him a lazy baby as he would fall asleep when I was feeding him.
Turning a corner – or so we thought
After a week in the hospital, we seemed to be turning a corner, and we were told we could finally go home! Our paediatrician came in to give him the once-over before we left. My husband was standing holding the car seat all ready to go, and I had his coat, our other two boys were waiting for us at home.
Suddenly everything changed
The paediatrician shook his head. He said he could hear a murmur and he couldn’t find Eitan’s femoral pulses.
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His last surgery was the worst as he suffered complete and total heart block after the surgery and had to be paced for nine days. He suddenly reverted to sinus rhythm the day they were going to fit a permanent pacemaker.
A rocky road
The road has been rocky and scarier than anything we have ever experienced. There’s no amount of preparation that can protect you, as a parent, when you first see your child after open heart surgery. But on the other side, when you’re in a children’s hospital, you see so many sick children that you can’t help but think “we are lucky, at least they can ‘fix’ him.” There were many low points during Eitan’s surgery, but most of those were taken away by the phenomenal support we received from Professor Martin Elliot and his team at Great Ormond Street Hospital. I remember him sitting with me on the floor and coaxing me through when it all seemed so scary and dark. Eitan has a few issues still. He has hypertension and mild hypoplasia of the aortic arch. He takes Amlodipine, Enalapril, and Furosemide daily to control it and keep him well.
www.heartline.org.uk Please get in touch with your story, feedback and comments at email@example.com This newsletter is edited by Natalie Persoglio. Heartline Families is a Charitable Incorporated Organisation. Registered Charity Commission No: 1153442
For Mums, For Dads, For Everyone A little each month
We are lucky
For the time being the doctors are confident that Eitan can be kept well with the medication he takes daily, providing all stays stable. He does get a bit more tired running around, football etc., but it doesn’t stop him for long. On the whole, he is a relatively normal 10-year-old, and we are incredibly lucky!
By just giving a little each month, you could be helping to continue the circle of support that Heartline offers to mums, to dads, to everyone. Please look out for opportunities to donate regularly, or contact us for our details to set up a Direct Debit; whatever the amount. Contact the office at: firstname.lastname@example.org.
Terms used Femoral artery pulses – those that can be felt at the top of the legs. Ventricular Septal Defect - a hole in the heart, is a heart condition present at birth. Coarctation of the Aorta - Coarctation of the Aorta (COA) is a narrowing of the aorta, the main artery carrying oxygenated blood from the heart to the body. A condition that is also present at birth Congenital - present at birth. Pacemaker - a small device that’s placed in the chest or abdomen to help maintain a normal heart rhythm. Pulmonary Artery Band (PAB) – a band placed on the Pulmonary Artery to reduce blood flow to the lungs. Sinus Rhythm - a normal heart beat, both of the heart rate and rhythm. Hypertension - elevated blood pressure. Hypoplasia - underdevelopment or incomplete development of a tissue or organ. Aortic Arch - the portion of the main artery that bends between the ascending and descending aorta.
See fundraising information at: www.heartline.org.uk
More information about can be found on the Heartline website.
2017 Caravan Holiday Dates Announced Heartline has two caravan holiday homes for our families to use for a much-needed break with their heart children. The holidays are offered at a low-price as we subsidise the cost to make sure that every famimly has the opportunity to book.
Feedback on our holiday homes from families 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 (even sometimes in the school holidays), so please think about making use of this fabulous resource when you are planning your holiday.
Mablethorpe and Oakdene
One of our caravans is on the Golden Sands Park, Mablethorpe, Lincolnshire see: http://www.haven.com/parks/ lincolnshire/golden-sands/ and accommodates eight people. Our caravan is situated near to the facilities of the park but still not far from the stunningly beautiful beach. There are lots of leisure activities on offer, so there will never be a dull moment. Our other caravan is Oakdene Forest Park, in the New Forest – see: https://www.shorefield.co.uk/self-catering-holidays/our-parks/oakdene-forest-park/ – and accommodates eight people. The site is set in 55 acres of beautiful parkland bordering the Avon Forest and unspoilt river meadows. Our Oakdene caravan is near to the leisure facilities including a heated indoor pool with flume and toddlers’ beach area, heated outdoor pool with toddlers’ pools and sunbathing area, table tennis and pool tables, crazy golf, fishing, club house facilities, supermarket and off-licence. There are many entertainment parks in the area.
This year our caravans open on Saturday 18 March and close Saturday 4 November There are different charges depending on whether you are holidaying in the high season or the low season including different Easter School Holidays for Oakdene and Mablethorpe.
A facility for all of us
Due to some issues with the caravans over the last year Heartline now applies a £50 returnable (returned within 30 days after the last day of the booking) security charge. This will be returned unless there is damage to any of the property or cleaning required following the stay. Please bear in mind that the next family moves in on a Saturday and so, even with the security charge, it does not leave us time to arrange cleaning between Families which is why it is important that everyone cleans to a very high standard, as indeed most do.
Low season 2017
Saturday 18 March – Saturday 1 April Oakdene Saturday 18 March – Saturday 8 April Mablethorpe Saturday 15 April – Saturday 27 May Oakdene Saturday 22 April – Saturday 27 May Mablethorpe Saturday 3 June – Saturday 22 July Saturday 2 September – Saturday 21 October The charges are: Oakdene £50 a night and £180 a week Mablethorpe £45 a night and £150 a week
High season 2017
Saturday 1 April – Saturday 15 April Oakdene Saturday 8 April – Saturday 22 April Mablethorpe Summer half term: Saturday 27 May – Saturday 3 June Summer holidays: Saturday 22 July – Saturday 2 September Autumn Half Term: Saturday 21 October – Saturday 28 October Bookings are for a complete week in High Season. The charges are: Oakdene £400 a week Mablethorpe £380 a week
For more information or to book, please email email@example.com and see the website www.heartline.org.uk
New and updated - the latest edition
a practical handbook for parents From diagnosis and treatment, to the practicalities of life beyond your child’s heart condition £10 per copy £7 for multiple copies Associate Members of Heartline Families can receive a free copy Please let your hospital or GP know about this new edition, as they may wish to purchase some to provide for other heart patient children. Email firstname.lastname@example.org or visit www.heartline.org.uk, if you wish to enquire about joining or if you wish to buy a copy of Heart Children. HeartLine Families is a Registered Charitable Incorporated Organisation 1153442 5
GET ACTIVE! From Abseiling to Kayaking – let’s Go!
Let’s get active with our ever-popular activity weekends this coming summer! The weekend for children with heart conditions takes place from Friday 28 July to Monday 31 July 2017 at Caythorpe Court, Lincolnshire. We are also running our heart child siblings weekend from Friday 11 August to Monday 14 August 2017. The weekends are a great chance for children to make friends, build confidence and let loose! All activities are accompanied by a Heartline representative.
We ask you to deliver your child, with suitable clothing and a sleeping bag, to the site by 3.30 pm on Friday, and then collect after lunch at 2pm on Monday. The cost of the three-night break is covered by Heartline, including activities, accommodation, food and insurance. 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. We believe this to be an incredibly valuable opportunity for heart children. Each break the children will be accompanied by experienced Heartline parents. We have worked with PGL for several years.
SO MUCH TO DO!
Children and young people choose activities within their limitations from a wide range including abseiling, archery, arts, and crafts, balls sports, climbing, circus skills, cycling, fencing, kayaking, kite making, motor sports, orienteering, nature trails, snorkeling, and swimming. There is a qualified leader for all activities, and your child’s safety is always of paramount importance.
THE SMALL PRINT
Children must be aged between 9 and 17, and be able to produce a doctor’s letter confirming that your child is well enough to take part. We also require a £50 refundable deposit to secure places. Places are on a first come, first served basis. The places may be allocated by ballot if we get oversubscribed.
To qualify and apply for a place for your child you must be registered with Heartline Families. You can join us for free by completing the online form. We do need to check every application to be sure that the applicant is qualified and physically capable of taking part. Once you are registered with Heartline Families, you can apply for the Activity Weekend Form from email@example.com. Please see the website www.heartline.org.uk.
Niamh’s Passion For Life By mum, Claire McKenna.
Our first child, Niamh, was born on 20th of March 2004. I had a difficult labour. After she was born we were taken to a ward, and she was placed in a cot beside my bed. Occasionally a nurse would pop in to see how I was, but other than that, we were left alone. Our midwife popped in and said we couldn't go home until the baby had taken her first feed. I was keen to breastfeed but Niamh just couldn't latch-on and just kept falling asleep. This went on for two days. One midwife even me that my boobs were just too small; not what a brand new mum needs to hear.
Feeding problems were a sign of things to come
I was distressed and worried and confused. Finally, on day two, a midwife sat down with me and explained that, although I had been expressing milk and feeding it to the baby through a syringe, she just wasn't getting enough and suggested I try bottle feeding. Of course I said yes, I wanted my wee baby to have milk.
‘Oh dear, that’s not good’
At just 4 lbs 12ozs, Niamh was very tiny. As she started to feed, the midwife suddenly took the bottle away and said ‘Oh dear, that's not good’. I asked her what she
was talking about and she explained that Niamh was struggling to breathe, and had gone purple and mottled. Before I knew it, nurses were rushing in and they took her away from me without explanation. A while later a nurse told me that my baby was in intensive care and needed to have urgent tests carried out.
A heart scan
A doctor later explained they had done a scan of my baby, and he thought maybe there was something wrong with her heart. They were trying to get a hold of a cardiologist to confirm his suspicions. I phoned my husband, and we both went to the ICU, where Niamh was in an incubator attached to a heart monitor and wires. I have never been more terrified in my life. That day she was rushed by ambulance to Yorkhill Hospital. We were not allowed to travel with her; my husband and I had to get a train from Ayrshire to Glasgow.
When we arrived at Yorkhill Hospital, it was chaos. We were rushed to a family room and told that Niamh was going into heart failure. We had to wait in that room for what seemed an eternity. A doctor explained to us that Niamh had Transposition
of the Great Arteries, a Ventricular Septal Defect, and narrow arteries. They explained she would need heart surgery. However, there was a problem. Niamh was just too tiny to have the surgery. So they decided to put her into an induced coma and keep her on a machine, while they tube fed her to increase her weight.
I was numb, too shocked for emotions to kick in. When she was two weeks old, they decided to do a balloon operation. Sometimes I find it difficult to understand what the doctors and nurses say, it just gets lost. I just focus on trying to stay strong and not taking my eyes off my baby. The balloon seemed to work for a while and she was able to come off the ventilator. My timeline is fuzzy in places, as we were living on hospital chairs or in Ronald McDonald house.
Niamh made it home with us for a couple of occasions in May, but ultimately, her heart was a ticking time bomb; she needed another operation to buy her more time until she was a healthy enough weight to have the full surgery. Between March 2004 and October 2004 Niamh went into heart failure four times and was in between intensive care and the ward. In November 2004 she was finally well enough for the Transposition of the Great Arteries’ switch. Two weeks after that, she was up and jumping on her cot bed and being allowed to finally come home.
She came FIRST!
Niamh is now 12 years old and has soared through life with such force. She loves sports and is active, very rarely sitting down. Almost two years ago, she and her little sister, Aoife, started figure skating lessons, and this year started competing. In her first skating competition, she came fourth out of 23. And in her second competition, in Wales, she came first.
Her heart won’t slow her down
She is hoping to compete at a higher level next year. She does tire more quickly than ‘normal’ kids, but she is very stubborn and will push herself, she doesn't let her heart slow her down.
She will need more surgery at some point, because of her arteries narrowing. But, for now, she attends cardiology check-ups just once a year. She has also this year been diagnosed with migraines, and she’s had to endure problems with bullying, and yet she still gets up and soars. She has a passion for life and she is very determined to reach her goals.
Heart scan - a scan of the heart, also known as an Echocardiogram. ICU - Intensive Care Unit Transposition of the Great Arteries - a congenital condition where that the two main blood vessels leaving the heart, the pulmonary artery (which takes blood to the lungs to pick up oxygen) and the aorta (which takes blood from the heart to the body) are swapped over (switched).
Endocarditis: Daniel’s Story By mum, Janie Hutchison
I first noticed Daniel was really ill, in February, after he had suffered from fever for a week. He complained of a headache on Sunday, I dosed him up with Calpol, and on Monday morning I sent him off to school. When I picked him up at home-time, his teacher said he'd been feeling ill and that he’d been complaining of a sore head. She told me that at one point his eyes rolled, and she thought he was going to fall asleep. I kept him off school over the next few days and, by Thursday morning, took him to the GP. He'd also started complaining of pains in the bottom of his legs.
The GP diagnosed a virus and gave me a prescription for paracetamol and ibuprofen. I'd stopped giving him paracetamol by this time, as it wasn't touching the temperature (which was 39.2 - 39.5). The only thing taking it down at all was ibuprofen. On Sunday he got up and dressed and went out to play first thing, totally well.
The symptoms came back
A few weeks later the symptoms came back, and I took him back to the GP. I had posted a comment on the Tetralogy of Fallot Facebook page and a woman in Wales replied that she didn't want to alarm me but that the symptoms sounded like Endocarditis, which had resulted in her daughter passing away. I mentioned this to the GP, and also that I was worried, as normally a fever is a sign of infection, and that I couldn't risk Daniel having any sort of infection in his bloodstream because of his heart.
She diagnosed a secondary chest infection on the back of a flu-like virus and asked to see him in a week when he'd had a course of antibiotics. The following week he seemed okay but very pale. The GP had told me to contact her if the sym
symptoms came back. They were back again that weekend, and so I called the surgery in the morning. It was a week before we were able to see the doctor. She ran blood tests and the next day called us back into the surgery.
Wait a week for an appointment
Daniel's white cell count was low, and there was inflammation somewhere in his body. She called the local hospital mentioning the risk of Endocarditis. They said they would also send out an appointment in a week or so. I wasn't happy with this, and so I called the children's hospital in Glasgow, as they were in charge of his cardiac care. The registrar there told me not to wait for an appointment and to take him to A&E the next morning. As he has open access, I took him to the ward. He was kept in from Friday to Monday as Glasgow Hospital needed six lots of blood taken and cultures grown.
Unlikely to be Endocarditis
A consultant told me that it was highly unlikely that it was Endocarditis, as it was extremely rare, but I explained I'd spoken with three people with personal experience of it. The cultures showed growth of a strep-like bacteria and so we were transferred to Glasgow Children’s Hospital on a Monday afternoon. Daniel had an echo, which showed the infection in his valve and, so, the following day they started him on a six-week course of intravenous antibiotics. He initially was very well but the following week started spiking temperatures again, and so they changed his antibiotics back to the high strength ones.
Fear of needles
He was given a catheter that is inserted into a large vein, as that was the best way to get the antibiotics in. One of them really stings if given through a cannula and by this time he'd developed a fear of needles. One of the mornings, I went to wake him, and the end
of the line had broken off. They had to give him sedation to put another cannula in and that night he was in a lot of pain from the antibiotics. He was taken to the theatre on Monday morning, and they put in a new line and stitched it in place. His haemoglobin was also extremely low, so low that they said the reading was as if he were bleeding heavily from somewhere.
Infectious Diseases Team
The infectious diseases team in charge of the antibiotics would not allow him to be given iron as the bacteria would feed on it. When the six weeks were up, he was discharged, but I was told if he had a temperature to take him back to Glasgow. The next day I had to take him as he'd spiked again. They were talking about starting a new course of antibiotics for 12 weeks this time and a valve replacement as maybe they wouldn't be able to kill it completely. Luckily Daniel's infection levels started coming back down, and he was discharged again a few days later. They said they might never know what caused the second infection. He had to go back in the following week for a blood transfusion as his blood count was still so low. He will need to have teeth removed as a precaution. He has some tiny holes in his teeth, no infection but they are wanting them removed to minimise the risk of it happening again.
A bug that lives in all our mouths
Daniel's bug was one that lives in all our mouths, it can be passed into the blood stream by the simple act of eating and chewing food. When he was in the hospital, I posted on the heart mummies page and the tetralogy page asking if everyone was aware of Endocarditis, the risks and the symptoms. Most people had never even heard of it, and hardly anyone knew the symptoms. If I hadn't had the seed planted in my head from someone who had dealt with it, I would have kept dismissing Daniel's symptoms as being bugs picked up at school, and it's scary how easily his outcome could have been very different.
Terms used Tetralogy of Fallot - Tetralogy means fourfold – there are four defects found together. Endocarditis - an inflammation (swelling) of the inner lining (endocardium) of the chambers of the heart usually as a consequence of an infection. Cannula - a thin tube inserted into a vein to administer medication, drain off fluid, or insert a surgical instrument.
Endocarditis: the facts What is infective endocarditis?
Infective endocarditis is a life-threatening infection in which the inner lining of the heart, particularly the heart valves, becomes inflamed.
Who is at risk of infective endocarditis? You are more likely to get infective endocarditis if you already have a heart condition or heart valve damage. It is best to ask your cardiologist if you are more at risk of infective endocarditis.
However, generally, your risk for developing infective endocarditis is increased if you: ● have had a valve replacement ● were born with a heart condition (other than an isolated atrial septal defect, a repaired ventricular septal defect or a repaired patent ductus arteriosus); ● have hypertrophic cardiomyopathy ● have a disease affecting your heart valves; or ● have had infective endocarditis before. You should not be at increased risk of infective endocarditis if you: ● have a pacemaker or defibrillator; ● have an arrhythmia such as supraventricular tachycardia (SVT); or ● have acquired heart disease which has not damaged the heart valves, for example, Kawasaki Syndrome.
What causes infective endocarditis?
Infective endocarditis is caused by certain types of bacteria that get into the blood stream in very large numbers.
Endocarditis: the facts What are the symptoms of infective endocarditis?
The symptoms of infective endocarditis can either develop slowly or come on suddenly. These can include: ● feeling generally unwell, tired and inactive; ● having a fever; and/or ● shivering and sweating at night. If you suspect infective endocarditis, you should contact your GP. Remind the GP that you are at increased risk of infective endocarditis because of your heart condition and ask for a blood test. If you feel the need for a diagnosis is urgent, contact the cardiac liaison nurse (CLN) at your nearest paediatric cardiac unit. The CLN should then arrange for a blood test to be taken, or arrange for you to see a cardiologist.
As of 17 March 2008, NICE recommends that antibiotics should no longer be offered before medical and dental procedures, unless the procedure is at a site where there is already a suspected infection. The reason for this change in guideline is because dental and medical procedures are no longer thought to be the main cause of infective endocarditis. Taking antibiotics can also carry its own risks as it may lead to anaphylactic shock (a severe allergic reaction). If you have been receiving antibiotics for dental treatment in the past, you can talk to your cardiologist about the recent changes in the guidelines and how these affect you. You may also find it useful to read our award-winning booklet about oral hygiene ‘Dental Care for Children with Heart Conditions’. You can request a free copy by emailing firstname.lastname@example.org
A blood test and an echocardiogram (an ultrasound scan of the heart) will usually be enough to show if you have infective endocarditis.
Preventing infective endocarditis
There are a few things that you can do to try and prevent getting infective endocarditis.
Good oral hygiene
Dental problems such as tooth decay and gum disease can lead to infective endocarditis. Therefore it is important to make sure that your teeth and gums are properly looked after.
Piercing and tattooing
Avoid any body piercing or tattooing as these carry a high risk of infection. Piercings on or around the mouth are very risky. You should check with your cardiologist if ear piercing should be carried out with antibiotic cover.
Infective endocarditis and antibiotics
Until recently, people at risk of infective endocarditis were offered antibiotics before certain medical or dental procedures. However, the effectiveness of preventing infective endocarditis by taking antibiotics had never been properly investigated. As a result, the National Institute for Health and Clinical Excellence (NICE) was asked to examine this in more detail and, based on their findings, provide guidance on the use of antibiotics against infective endocarditis.
Keep in Touch
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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. New and updated - the latest edition - Heart Children a practical handbook for parents. £10 per copy, £7 for multiple copies. Associate Members of Heartline Families can request a free copy. Please let your hospital or GP know about this new edition, as they may wish to purchase some to provide for other heart patient children. Email firstname.lastname@example.org or visit www.heartline. org.uk, if you wish to enquire about joining or if you wish to buy a copy of Heart Children.
Tell Your Story
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Heartline Families is edited by Natalie Persoglio. Please send articles, photos and feature ideas by email to firstname.lastname@example.org
Don’t forget - we also have a private Facebook group, for which we will send you an invitation when your membership has been approved and confirmed.
Heartline Families is a Charitable Incorporated Organisation. Registered Charity Commission No: 1153442 12
Winter edition of the Heartline Families newsletter, featuring real-life stories, news and information from the heart world.
Published on Feb 13, 2017
Winter edition of the Heartline Families newsletter, featuring real-life stories, news and information from the heart world.