We all know that exercise should be part of our lives. It helps us to stay fit and reduces the risks of short- and long-term health problems as we get older. But what about children with a complex congenital heart condition: how easy is it for them to follow the same advice?
This information is also available in PDF booklet format, click here to download it.
There is increasing evidence to support the need for most children and adults with a congenital heart problem to take some form of exercise. It can increase the effectiveness of their heart muscle and generally aid the circulation of blood around their body. It may also reduce the number of infections they catch as they become more generally fit and healthy.
Whilst it is crucial to remember that people living with only half a working heart do not have the energy levels of their peers, most children and young adults can take part in some sort of exercise. It is important that every young person has the opportunity to explore and participate in exercise where it is physically safe for them to do so.
This information is written for young people with half a heart, parents, teachers and club leaders. It aims to give overall guidance for leisure and school sport and exercise. The printed booklet also includes a chart which can be used by individuals to give an up-to-date personalised picture of what is safe for them.
Exercising your muscles and increasing your heart activity can be really good for you, but you may need to be careful about what sort of sport you take up. Think about which sports you would like to get involved in and then talk to your heart doctor (cardiologist) about what is safe for you. It may not be the same as other children in your school or college but it will help to get you fitter and meet new people.
It is important to pace any increase in activity so that the heart and lungs can gradually build up their ability to cope with a new demand on their energy levels. The activity needs to become part of the daily energy use but it is essential that the sport does not use up all of the daily energy available, leaving a young person short of energy for the other activities in the day. Balance is essential.
Don’t throw yourself into an activity or sport. Assess what energy will be needed and slowly start to take part. Allow yourself time for breaks and a drink. Gradually as your fitness improves, the length of time you can take part will increase. You may never be able to play 45 minutes each way but you can take part.
Some children and young adults will be given an exercise tolerance test as part of their routine cardiac tests at the hospital. They will walk or run on a treadmill or cycle whilst having an ECG and blood pressure tests. Occasionally they may have some breathing and oxygen level tests done as well. These tests can tell the medical team how fit the heart is and also indicate what exercise can be prescribed safely.
Many units are now giving children a formal exercise ‘prescription’ in the same way as a drug might be prescribed. This recognises how important regular exercise is for children with heart conditions and also helps to ensure that the correct exercise is taken for their individual condition. If you have any areas of uncertainty, you could ask your consultant about this.
Anyone in education aged 0 – 24 years with a long-term health condition should have a Healthcare Plan. Plans are written in partnership between parents, teachers and the pupil. They may also involve the school nurse and the hospital-based specialist team. Each Education Authority has their own plan so ask the school’s Special Educational Needs Co-ordinator (SENCO) for a copy. Safe inclusion in sport and exercise in school should be included in the plan. Use this booklet to help teachers understand how to keep a child safe whilst doing PE.
Exercise is any sport or activity that makes your muscles work harder than if you were just sitting down. It makes you feel warm and, in some cases, breathless. The exercise can include swimming for fun, riding a bicycle, playing football in the garden or going to a dance class. It should be fun and gradually anyone taking part regularly should be able to increase the length of time that they can take part whilst still being able to talk to the other people around them.
Activity is an experience that keeps you active but may not include exercise. Going fishing, joining a drama group, singing in a choir or joining a chess club are all activities where you can meet other people, join in and have fun but they do not exercise your heart or other muscles.
This is a game, match or physical activity where there is an element of competition, either with yourself or against other people. Some competition can be safe, for example, golf, archery, cycling or beginners table tennis or badminton, and the skills part of a football or netball lesson. It will require a gradual increase in involvement as a child becomes fitter.
There are also more adventurous outdoor pursuits, such as hillwalking, climbing, abseiling, zip wire, canoeing, etc.
These are the type of activities often undertaken on school residentials, with organisations such as Cubs and Scouts, or as part of the Duke of Edinburgh’s (DofE) Award programme.
You should seek advice from your cardiologist about these types of activity. You must also discuss your condition with the instructors / activity leaders in advance to ensure you can participate as much as possible, but within safe limits. Always follow all safety instructions and wear the correct safety gear. Many of these activities will be safe for you, but there may need to be some small adaptations. For example, for water sports such as canoeing, you may need to wear a wet suit, and have a change of clothes ready to change into straight afterwards. Or for climbing, you may need to agree a height limit with the instructors in advance, so that you do not push yourself too hard. With an activity such as zip wire, you will need to be careful if there is a hard impact at the other end of the wire. You may need to be careful with the type of harnesses used, if any of them put pressure on your chest. Activities such as hillwalking will probably need a more substantial adjustment, depending on how far you are able to walk, and whether you are able to safely carry anything.
Children with half a heart can often take part and really enjoy sport and exercise safely. Competition and personal achievement can be very important for children, especially as it helps them feel included.
Some sports may be more suited to a child’s ability and energy levels. A conversation with their cardiologist will give you confidence to introduce a sport if you are worried about the level level of safety.
Most children with half a heart will want to get involved in the activity going on around them. Running around the playground, taking part in running in a PE lesson, hurdles, long jump and high jump can all be inclusive and can be very good exercise as long as child is able to sit down when they are tired and they are not forced into a competitive running situation if they are not fit enough to do so.
Swimming can be a very good exercise for a child with a single ventricle heart to get involved in. The water takes some of the strain as it supports the weight of the body. Most schools encourage children to learn to swim.
Here are some helpful pointers when planning a swimming lesson.
Learning the different types of strokes is very good and building up the ability to keep safe in the water by swimming lengths and learning to tread water is good exercise. Taking part in races would come under the heading of competitive sport and should be avoided unless a doctor has said it is safe.
Children with half a working heart get very cold and very tired whilst swimming and when they get out of the pool.
A couple of useful tips include:
Football is played both competitively and for fun in school. Children love to be involved in a game of football in the playground. It can be a great way to keep warm in break time as well as being a social game to play with friends.
As with all sports and PE lessons, learning the skills of the sport is a great thing for all children. More care may need to be taken when it comes to the competitive part of the game.
Some children are encouraged to take a position in goal as there is less activity. Care must be taken to ensure that they keep warm as there may be long periods with little activity. It is also important to remember that goalkeepers have to throw themselves around the goal to keep the ball out and this can lead to bruising if a child is on anticoagulation.
Some young people find cycling a good form of exercise because the pace can be set individually and the wheels help the activity and achievement. It has the added benefit that it also helps with getting around.
If a child is struggling with the activity and electric bike would give them some added support,
Racket or bat sports include tennis, table tennis and badminton. They are often at a lower intensity and can be played as doubles so the game can be shared but they provide competition and exercise. Once the game becomes more competitive it becomes more physical.
Cricket and rounders encourage team activity and apart from the time when a player runs (a runner can be substituted if the running is difficult), the game is of a lower intensity.
Both dance and gymnastics provide exercise and fun but can also help with the development of gross motor skills. Often children with a heart condition have delays in the development of their gross motor skills, balance, co-ordination and perception.
If a child is prescribed anticoagulation, care is needed if they fall from equipment. If they have a pacemaker the position of the device, in the abdomen or chest, may restrict the type of equipment they can use.
There are many types of martial arts and many children are attracted to them because of the kudos of the sports. Discipline, respect and personal control are all part of the activity which can be helpful for some children. Some martial arts expect physical contact early in the training, judo for example. Others restrict combat until later but it will be an expectation of the sport eventually. If a child is on anticoagulation, the physical contact will be an issue as it is a contact sport.
It is important to think about both the short-term and long-term implications of taking up a martial art. If a child becomes skilled in the sport and wants to take it up long-term, they may be disappointed because as the level of combat increases, they may need to be excluded for their safety.
Sports such as golf, bowls and archery require precision and are very competitive but they require much lower levels of physical exertion. These sports may be attractive to young people with a low exercise tolerance.
Activity based computer games are very popular with children and teenagers. As with any sports activity, care must be taken to follow the GOLDEN RULE when taking part. Regular breaks in activity should be encouraged.
It is important that children in school have an opportunity to take part in school PE lessons if possible. There is a statutory requirement for all pupils to be offered PE in schools unless there is a specific medical reason why they should not be included.
In primary education the aims are to:
Healthcare Plans (HCPs) are now a statutory requirement for any child with a long-term health condition. Information on what sport and exercise a child may take part in are an essential part of the plan, as is the medical response plan should a child become ill. Remember to include things like keeping warm after swimming and planning rests during a lesson if a child becomes breathless.
Most PE teachers are grateful if parents explain what a child can or can’t do at the beginning of each school year. It is also important for young people to take on this responsibility themselves as they get older so that they can build a greater understanding of what their body can or can’t do.
Most secondary school PE lessons are split into four sections.
This section of the lesson warms up the muscles ready to play sport. As long as there is no running laps around the sports field, a little bit of a jog will warm up the legs.
Within every PE lesson the teacher will demonstrate the skills and rules needed to play that sport and will get the students to practise those skills. As long as the skills test does not expect too much chasing around, it is a good way to learn about the sport and get involved.
This is the part of the lesson where you put the skills learnt into practice. If the sport is very competitive or physically demanding, this is the section of the lesson that anyone with a complex heart condition may need to avoid. Learning about the game by watching, taking part in the refereeing or choosing a different activity may be the best way to cope with difficult sports. It is often a problem to keep warm if you have to sit out this section. Schools may have a choice of sports that can be played during PE; lower endurance sports may be the best choice.
It is very important to cool down correctly and stretch out the muscles at the end of a lesson, as it helps prevent pulled muscles. It is safe to join in with this part of the lesson. It is also important to put on an extra layer of clothes after a cool-down so that the muscles do not get cold, causing cramp.
For more information on PE in the curriculum click here.
If a child follows the GOLDEN RULE set out earlier, that they should always be able to talk whilst they exercise, they may become a little breathless during activity but they should be able to recover quickly.
Just sit them down with their chest upright and gradually their breathing will settle.
If a child pushes their activity too far, they will become so breathless that they will not be able to talk. They will be unlikely to be able to breathe effectively for some time. Their colour may change, becoming pale with very red cheeks and increasingly blue lips. Their chests will heave up and down and they will be very sweaty but often they have cold hands and feet. Their heart rate will be very fast and may be erratic.
It is important that the expertise comes to the child as the ambulance team can start treatment as soon as they arrive: they have oxygen on board, they can record the heart rhythm and oxygen saturations rates and can ring through to the hospital for advice. If you put the child in a car their condition can deteriorate and you will be unable to provide the necessary treatment if you are driving them.
Teachers need to have all the medical information about a child to hand to take to the hospital with them should it be needed. Everything should be included in a child’s Healthcare Plan, and a copy should be held in the PE department.
It is important not to stop your child taking part in exercise as it is a great way to feel included in school life. Exercise just needs to be approached positively and sensibly to keep a child or young adult safe.
It is important that you are responsible for stepping away from a game or exercise when you can feel that your heart and lungs are under strain. It is better to take a five-minute rest and then play again than to collapse because your heart and lungs cannot cope with the pressure.
Many schools encourage children to take part in the 20-metre multi-stage fitness test or bleep test. This is a fitness test that tests the fitness of children or young adults taking part in PE. It is also used by some sports clubs and other organisations such as Cubs and Scouts.
The test starts slowly with a child running between posts or stages 20 metres apart with a bleep sound setting off the next run. The time between each bleep gets shorter and shorter, with children running more and more quickly between each stage. In theory, children can stop when they get tired and so some children with only half a heart like to be included in the early stage of the test, stepping away when they get a bit breathless, or at a pre-agreed limit.
Whilst the LHM team is very keen for children to get involved with as much activity as safely possible, this type of competitive exercise can pose a danger for children who do not listen to their heart or lungs.
There are some activities that are less safe for children with single ventricle heart conditions.
These are sports where you have to race to beat someone else. In a football match it would be racing with the ball to score a goal or a touchdown in rugby. In a running race you would be trying to be the first to cross the line, in the swimming pool you would race for the finish, and you would race the bleep in the exercise tolerance bleep test. The very nature of competition is to push yourself to win so you try to make your heart and lungs work harder to get there first.
Why should competitive sports be avoided?
In a competitive environment, children and adults push themselves to win. They fail to listen to their body when they become too breathless to talk and they demand more activity than their heart can manage. Competitive sports also uses up all of the energy stores collected around the body so a child may run and win a race but they may take days to recover their energy stores and this leaves them unable to take part in everyday activity for two to three days.
Research conducted by Professor Gewillig from Belgium suggests that children with normally functioning hearts will have an energy level of 100% at rest which can rise to 500% when they exercise. Children with a Fontan circulation have energy levels between 50 and 70% at rest and can only raise the level to 200% on exercise.
This is where you have a risk of bumping into someone or where physical activity is part of the game: for example, in rugby you tackle the opposition, in judo you get thrown to the floor. It is not a good idea to do any of this type of sport for two reasons:
When using weights or when pushing against a resistance you raise your body pressure to take the added strain. This can create an added strain on the heart and should be avoided.
Some activities like paintballing or trampolining hold a potential risk of bruising or bleeding if a child is on anticoagulation, for example, Warfarin or Aspirin. If children like to bounce make sure that they are supervised and alone on the trampoline so that they do not get knocked.
If you want to take part in sport you should think about what type of sport, exercise or activity you are interested in and what is safe to do. You must consider not just the moment of the activity but what effect that activity will have on your energy levels for the rest of the week. It is all about personal responsibility (guided by parents and teachers when you are younger) and finding a lifestyle balance that includes as much fun and games as possible, whilst also leaving enough energy to learn in school or take part in a job.
Young people with half a working heart often find it difficult to balance all the things that they want to do in a day with their reduced energy levels. The Half a Heart, Half the Energy project can help them learn to balance the expectations in their day so that they maximise their inclusion.
Sport and exercise can help to gradually increase their fitness and allow them to gain better use of their limited energy levels.
To help children and teenagers learn how to manage their limited energy the LHM youth team have developed a way of using spoons to explain the use of energy each day.
For more information and the chance to watch the energy film, follow this link to the Half a Heart, Half the Energy project information.
It is important that every child is able to take part in all activities, if their heart condition will allow it. Ensuring that schools make provision for children to take part in PE, dance, drama and off-site activities is essential.
Each school and Local Authority will have an inclusion policy for you to refer to if there are any concerns about your child’s inclusion.
Telephone: 0121 455 8982; Email: info@lhm.org.uk
A national charity that enables organisations to support individual disabled people to be and stay active for life.
www.scottishdisabilitysport.com
Provide information to disabled people who want to take up sport, either at a recreational or competitive level. They signpost people to disability sports that are available to them and where they can go to play them.
This is the national disability sports organisation for wheelchair sports which aims to provide opportunities for disabled people to find a sport they enjoy from a broad range of possibilities. They offer a junior sport programme (information can be found in the ‘Sport events’ section of the website).
Written by: Suzie Hutchinson Chief Executive Little Hearts Matter
Medically verified by: Dr A G Stuart MBchB Cert Genomic Med Msc FRCPCH FRCP FESC Consultant Cardiologist
Edited by: Isabel Baumber
Photography by: LHM Families
Disclosure: Dr A G Stuart has no conflict of interest.
References are available from the LHM office on request.
