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Helping your child with congenital heart disease to stay healthy

This page explains about helping your child with congenital heart disease to stay healthy and what to expect when your child comes to Great Ormond Street Hospital (GOSH).

Bringing up children is one of the hardest jobs in the world. Having a child with a congenital heart defect (CHD) can make this more challenging. As parents you want the best for your child, so that they grow into adulthood as individuals who are able to participate fully in their community and society as a whole, as well as happy and healthy.

Children with CHD are, in the first instance, children, and so have the same needs as any other child. They face similar challenges, such as making friends, understanding their body as they grow, school, work and a place in society.

A child with CHD has, in addition, the challenges their condition brings, which can make ordinary growing up more difficult. Friendships, being active, taking part in group activities, keeping up with school work and staying healthy, can all help to make any child happy and feel safe and secure in their life.

Eight tips on helping your child stay healthy and well:

Teeth

Having strong healthy teeth encourages us to smile. When we smile and laugh we feel good about ourselves.

We all look better with good teeth. Keeping teeth and mouths healthy is more than cosmetic. When teeth and gums are not cared for, infections can get into the blood stream.

Individuals with CHD are at more risk than the general population of an infection affecting the inside of the heart and damaging the valves, leading to heart failure. This is called endocarditis. Although rare, it is a very serious condition, and can be life threatening.

The best way to avoid endocarditis is to look after teeth and gums. A healthy mouth and teeth are also thought to protect the body from other illnesses. Endocarditis and other infections can also occur after damage to or cutting the skin, such as having tattoos and piercings, so it is recommended these are avoided.

Brushing teeth with fluoride toothpaste twice a day, once being before bedtime, is good practice as recommended by dentists. Children should be encouraged to spit out toothpaste but not to rinse with water.

Sugary foods and drinks are popular with children and avoiding them completely may be difficult – the alternative is to limit them to mealtimes. Sugary drinks, when sipped frequently over a long period via a bottle, can increase the risk of tooth decay as the mouth and teeth are covered with the sugary drink for longer. The bacteria build up on the teeth can produce acid that destroys the tooth.

Tooth decay in milk teeth can affect the adult teeth so it is important to look after children’s teeth the moment they come through.

Key points:

  • healthy teeth and gums help to keep the body healthy

  • looking after teeth and gums helps prevent endocarditis

  • brush teeth twice a day with fluoride toothpaste

  • limit sweets and sugary drinks

  • see your dentist regularly

Now what?

  • How might this information change how you look after your child’s teeth?

  • Discuss any concerns about teeth and gums with your child’s dentist.

  • Consider incorporating at least two of the recommendations from the Live Well NHS Choices website about dental care.

Staying happy and making friends

Happiness is a subjective and personal thing. Different things can make us unhappy; being unable to walk very far, having no friends, being unemployed, illness, feeling different and isolated.

The reverse is that being active, feeling well, having friends and family around, good work prospects and feeling positive about oneself and the future can help towards making individuals happy.

Research has identified that some children with CHD can feel lonely, that they feel different from their peers and so feel isolated. This can be exacerbated for those children who have frequent hospital visits and admission keeping them away from school.

Hospital admissions can also be stressful and frightening to young children and impact on how they continue accessing health care as they grow. If this is the case, it may be worth speaking to your cardiac liaison nurse, cardiologist or GP about what psychological support and help might be available.

Having a life-long health condition can feel burdensome, as other people don't always understand what it is like. There are several organisations that help young people come to terms with their condition as well as sharing experiences with other young people who also have a life-long condition.

The British Heart Foundation and Children’s Heart Federation also have away days and camps throughout the year where children and young people can meet others with similar conditions and try new activities under supervision.

For teenagers there are various websites where they can learn about others who have had a similar experience. The Children’s Heart Federation has “Brighthearts”, the British Heart Foundation has “yheart”.

Key points:

  • life long health conditions can affect children’s well being

  • heart condition may make a child feel different to friends

  • people with similar experiences can support one another

Now what?

  • Think how you might support your child to talk about their life-long condition and how it affects them.

  • Are there any activities or groups that your child would enjoy being part of? This may be a way of making new friends, learning a new skill and keeping active.

  • Consider taking part in one of the following:

    • British Heart Foundation away day

    • Children’s Heart Federation camps

Keeping active

Exercise cannot only be fun but can also improve fitness levels, motor skills, help build friendships and improve quality of life. Everyone can benefit from some form of regular exercise, such as walking, dancing, taking the dog out, playing a sport or flying a kite with friends.

The newspapers and health professionals warn that a sedentary life style can lead to serious health problems such as obesity, poor heart function, joint problems and weak muscles and bones.

It is important for those with a CHD to also take part in physical activities as this can help to preserve their fitness levels as well as improve quality of life. Guidelines suggest that children should have about 60 minutes of exercise each day, this could be split into 10 to 15 minute intervals spread throughout the day.

Children with CHD are likely to tire before their peers and should be supported when they want to take a rest or go at their own pace.

However, the level of physical activity may be restricted for some children, perhaps before the defect has been corrected or after surgery where there is a residual defect. It is important to discuss with your child’s cardiologist any limitations for them to take part in a sport or physical activity.

Remember to tell your child’s school they may need to take regular breaks when doing physical activities or about any restrictions in taking part in sports.

Key points:

  • exercise is important even for individuals with a heart condition

  • sixty minutes physical activity a day in 10 to 15 minute periods, for at least two days a week

  • check with your child’s cardiologist about any limitations

Now what?

  • How might you incorporate physical activities into your child’s daily routine that they would find fun?

  • Discuss with your child’s cardiologist any limitations related to their condition about physical activities, particularly in undertaking any competitive sports or if your child is new to physical activities.

  • Consider taking part in one of the British Heart Foundation or Children’s Heart Federation weekend camps or away days.

Growing

Many things are important in nurturing children and helping them grow and develop and learn. A healthy diet and a good night’s sleep are important. Equally a poor diet and lack of sleep can have a detrimental effect on children’s growth and ability to learn.

Key points:

  • a good night’s sleep is important for a child’s wellbeing

  • balanced diet is ideal: a little of everything with the occasional sugary or salty snack for a treat

Diet and food

There are already many articles in the media advising about how to have a healthy diet. Children with CHD may need extra calories when they are babies to help them thrive but after that a normal balanced diet is recommended.

Foods with a high salt, sugar and fat content, such as processed and preprepared foods and snacks can, over long periods of time, be damaging to our bodies. It can affect the heart and kidneys and may lead to diabetes and raised blood pressure which increases the risks of strokes and damage to the body’s major organs.

Children should eat a variety of foods throughout the day so they have a selection of two or three from each food group, aiming for five portions of fruit and vegetables a day. Sugary foods, snacks and drinks should be limited to mealtimes or special occasions.

Food groups:

  • Cereals - bread, potatoes, rice, pasta, breakfast cereals.

  • Fruit and vegetables - includes fruit juice, dried and frsh fruit.

  • Milk - cheese, yoghurt and milk.

  • Meat, fish and other proteins - fish, meat, nuts, pulses.

Sleep

The amount of sleep children need depends on their age. Sleep is important for wellbeing and a lack of it can make concentration during the day difficult as well as affecting mood and lead to cravings for junk food.

Poor sleep has been related to the use of TVs and computers in bedrooms, particularly being used into the evening, as well as late nights.

Now what?

  • Compare your child’s actual sleep hours to the recommended amount. Could your child benefit from more sleep at night-time?

  • How many portions of fruit and vegetables a day does your child have? Consider ways to increase them if currently having less than five portions.

  • Consider whether your child regularly in a day eats from all four of the food groups. Talk to someone if you are worried or uncertain about your child’s diet.

Understanding their heart condition

As parents you will teach and guide your child as they grow. At different stages in their life, they will start to understand more about their heart condition. Small bit of information can be given to them when they are young, with more complex information introduced as they get older.

Keeping a diary when they are young or a scrapbook can help to have a focus when talking to them about any hospital admissions and treatment they had when small.

There are many parent organisations and heart charities that can provide information to help you as a parent.

As your child grows they may enjoy exploring and finding out about how their body works, about their condition and finding out about other children who have similar conditions or experiences.

Key points:

  • Children with congenital heart disease survive into adulthood and most will need life-long follow up by an adult cardiologist.

  • Children therefore need to:

    • understand their condition

    • learn to take on the responsibility of their own health needs as they move towards adulthood

    • be aware of transition - the gradual move to adults services usually from 14 years of age

Transition to adult services

Children as they move towards adulthood will be expected to take responsibility for their own health needs. Understanding their condition is one step towards being able to do this. Another change will be that their care will be under a cardiologist who cares for adult patients only.

The move to adult services usually starts when they are between 12 and 14 years old. We often refer to this as transition.

Parents and the child will meet their adult cardiologist, who specialise in congenital heart disease, alongside a paediatric cardiologist. This joint management continues until the child reaches 16 to 18 years of age when they move completely over to adult services.

Now what?

  • How might you learn more about your child’s condition in order to teach them?

  • Think of one or two ways to regularly help your child understand their condition and how it relates to their body.

  • What resources available from the various websites and heart charities might your child find useful and understand a little more about their heart condition?

  • Consider keeping a diary or scrap book about the various stages of your child’s treatment and hospital admissions to show your child as they grow up.

  • Find out more about your child’s condition and transition from their cardiologist or cardiac specialist nurse.

More information

If you have any questions, please contact your named cardiac specialist nurse.

Last reviewed by Great Ormond Street Hospital: Novemeber 2011
Ref: 2011F1051 November 2011
Compiled by the Cardiac Liaison Nurse team in collaboration with the Child and Family Information Group

This information does not constitute health or medical advice and will not necessarily reflect treatment at other hospitals. If you have any questions, please ask your doctor. No liability can be taken as a result of using this information.