Coping with chronic illness like congenital heart defects

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Read about chronic illness and ways to cope. Congenital heart disease is a common example. While it can often be well managed, it never goes away.

Key points

  • Congenital heart disease is a chronic illness but does not mean a child will feel unwell all the time.
  • How old a child is when diagnosed with a heart condition can determine how they cope as they grow up.
  • Parents can support children with chronic illness by letting them know what's going and what lies ahead in terms of treatment, providing many opportunities for choice as possible, and trying to model calmness in their reactions.

This page explains how a child's chronic illness affects both parents and children.

What is chronic illness?

Chronic illness refers to an ongoing illness that often requires some amount of hospitalization. Congenital heart disease is a chronic illness because, while it can often be well managed, it never goes away. Asthma, diabetes, and arthritis are other examples of chronic illness. About 15% to 18% of children in North America are estimated to have a chronic illness, ranging from mild to severe. Having a chronic illness does not mean that a child will feel unwell all the time.

What are the effects of chronic illness on children?

Chronic illness means that there will be times when the child feels worse and may need tests and treatment. On top of that, chronic illness can affect a child's ability to participate in common daily activities and can also make it difficult to go to school, make friends, and generally have a normal life. This can make children feel different and isolated. The situation is compounded when other children talk about a child looking different or being afraid of "catching" the illness. Some children cope well with the pressures of a chronic illness while others need special support.

How do children cope with chronic illness?

How a child copes with a chronic illness like congenital heart disease depends on many factors. Having a simple heart defect that requires only one surgery for correction, for example, will have a different effect on a child than a complex defect that requires many tests, surgeries, and hospitalizations. The latter scenario can make children fearful or withdrawn, and even angry.

It also depends on how old the child was when they were diagnosed. For instance, a child diagnosed at birth would have grown up with a different concept of "normal." In contrast, a child diagnosed later in life may have more struggles, although they are also more capable of understanding the nature of the condition and its treatment. Body image is also key; a child with scars or cyanosis, or who needs medical devices to manage day-to-day living, is likely to be more self-conscious. If something about a child changes, it takes a while for self-image to catch up. It's an adjustment, like moving to a new school or home.

A child's ability to cope depends largely on a child's personality and upbringing. Some handle stress better than others. Emotional stability is also influenced by family dynamics. If the family as a group is handling the illness well, the atmosphere will be more calming. If there are significant stresses, stress levels will increase for everyone involved, most notably the affected child.

What do parents worry about?

Seeing your child ill is very hard on parents, as well as all other family members. There are a number of things that parents worry about, including not being in control, not being able to help their child, and concern over not making the right treatment decisions. Some specific issues include:

  • Having to hand over care of their child to other people and having to put their trust in the health care team
  • Stress over making medical decisions for their child and not understanding what's going on
  • The struggle with their own emotions — anger, guilt — and physical and mental exhaustion
  • Figuring out how to support their child
  • Stress on the marriage
  • Spending so much time at the hospital that working becomes impossible and family income is significantly reduced
  • Worrying that everyone is evaluating how you deal with your child
  • Fear of surgery and its outcome
  • Fear of an emergency situation and knowing when to get help
  • Not knowing whether a medical or behavioural problem that arises after treatment is related to a heart condition
  • Stress of not knowing how their child is doing from one clinic appointment to the next
  • Not having access to a doctor who is knowledgeable about their child's condition
  • Knowing how to parent a chronically ill child
  • Not knowing how the condition will evolve and if or when it might worsen
  • What to tell friends and family
  • Monitoring their child's symptoms and knowing a condition may be worsening
  • Learning how to meet a child's needs at home after treatment
  • Meeting the needs of the entire family while caring for a sick child
  • Trying to define a "new normal"

How do you cope when your child is sick?

Your life will change dramatically once your child is diagnosed with a heart condition. You'll learn a new vocabulary and develop a new way of living. Many parents indicate that while discovering your child may have a lifelong condition is a bit like the "loss of a dream," it also provides the opportunity to see life in a new light and focus on the other good things that can be valued. Make sure you focus on your child as a person and not the illness. Try to be as positive as possible.

It’s very helpful to talk to people who are supportive and reliable, and who will be there for you now and in the future. This can be a family member, friend, or support group. (Be aware, however, that not everyone will cope well with the news. Some friends and even family members may not know how to react or what to say, and simply may not be around for you.) Learning as much as you can helps prepare you. This applies whether the condition is acute or chronic, predictable or unpredictable. Keep a diary to record your child's progress, treatments and tests undergone, and key team member names and phone numbers. Build relationships with team members so that you can have full trust in what they are doing for your child.

Speaking with other parents whose children have gone through something similar can also be beneficial, because they can share their experience. Your hospital may be able to put you in touch with these parents. You could also get in touch with support groups (like CHASE) and get involved in an Internet chat room. This is a great venue for asking questions, expressing concerns, and learning from the experiences of others.

There are also usually health care professionals associated with the hospital who are trained in counselling, such as child life specialists and social workers, who can provide some support.

A discharge planner can also help you plan ahead for when your child returns home. Ask the clinic nurse for a referral to these health professionals. If you find later on that it's getting increasingly difficult to manage your sick child at home, arrange for some respite care or occasional nursing support. Accept help from family and friends when needed, and give yourself time away to regenerate. Don't try to be a superhero.

In terms of keeping friends and family up to date about your child's condition (without having to make numerous phone calls a day), consider setting up a website that people can consult regularly or having a "point person" who can manage a phone tree.

Through all this, it’s important to look after yourself by managing your emotions, eating well, and finding some time to exercise and to relax. And it’s equally important to stay engaged with the rest of your family. Continue to nurture your relationship with your spouse or any other children you have.

How do you raise a child with chronic illness?

Raise them the same way you would another child. They need boundaries, opportunities, encouragement, and support. Overprotecting and spoiling them doesn't instill confidence and won't prepare them well for the future. Cultivating independence and having expectations of a child as they grow speaks to future wellness and the child's overall capability. Having structure also contributes to a sense of security. Also, by giving your child opportunities to make decisions, you give them a sense of being in control of their life (when so much of it is beyond their control).

How can you support your child?

It's critical to explain to your child, as best and as simply as possible, the origins of the illness. Many children feel guilty, believing that they are sick because they did something "bad." They also feel angry that they may not be able to do all the things their peers can do or not being able to "get well."

As a parent, you can support your child by letting them know what's going and what lies ahead in terms of treatment. Help provide as many opportunities for choice as possible. By staying calm yourself, you model calmness to your child. If your child is young, make sure they have a favourite toy to comfort them.

Communicate often so your child has a chance to express their emotions about the illness. If they are young, let them express himself themselves through play. If they are old enough, teach them problem solving skills and deep breathing techniques to cope with the effects of the condition on their life. Help them develop special interests that take the focus off the condition and give them something to be proud of. Above all, be loving and make your child a key player in your family's activities.

How do you help your child deal with pain?

When there will be pain involved with tests or treatment, encourage your child to breathe (some children tend to hold their breath in response to pain), stay calm yourself and don't fuss, help your child think of other happier thoughts (sometimes distracting them works), and hold them or stroke them as appropriate, and depending on their age.

How do you help your child get used to being different?

Talk with your child about the issues that are important to them. Communication will help ease stress. It will also serve to dispel misinformation that you or your child may be focused on. Encourage your child to live life to the fullest within the context of his illness. Help them develop strengths and areas of interest, things they can be proud of. Helping them grow as a person will build their self-esteem.

Self-esteem is how you feel about who you are and what you can do. Sometimes self-esteem takes a hit in a child with chronic illness if they feel they did something to deserve being sick or if the illness stops them from doing certain things. Building self-esteem can have beneficial effects in all areas of life, including making friends, fitting it, and doing well at school. On top of that, people with good self-esteem and a positive outlook also tend to be healthier and take better care of themselves.

Also, prepare your child for questions from peers and others about his condition, as well as possible teasing or bullying, which affects children who stand out as being "different." Your child will also need to be prepared to encounter ignorance from people who don't understand their condition. They may think, for example, that your child's heart condition is contagious. Educate your child and help out by informing others as necessary, with pamphlets, meetings, or face to face.

There are also health professionals at the hospital who can help your child adjust. These include social workers, child life specialists, and doctors who specialize in adolescent medicine. There may also be support groups or camps for kids with CHD in your area that connect children with common illnesses. In addition, there are lots of wonderful books for children that reinforce the pluses of being different.

How can you help your child deal with teasing or bullying?

Children often tease if they feel threatened by or are misinformed about someone. They also feel stronger themselves if they can pick on someone who seems weaker or different in some way. Often they pick up this attitude at home. Strategies for dealing with confrontation include:

  • Ignoring it
  • Refusing to express distress
  • Meeting it head on, looking the person in the eye and saying "I refuse to be treated like this," and forcing the confronter to respond
  • Defusing the situation with humour
  • If in a public place, simply walking away
  • If there is threat of assault, alerting people nearby by yelling "fire!" which gets more attention than "help!"

How do you help siblings cope?

When a child is very sick, it affects everyone in a family — parents, siblings, grandparents. Often, siblings get lost in the shuffle. All the attention is focused on the sick brother or sister. Everything seems to be about them: they get the visitors and the toys. Sometimes special occasions are forgotten when medical emergencies arise. All this can make siblings feel isolated and ignored. When parents are sad and frightened about a child, this can also affect the family dynamic.

Siblings may not get a chance to discuss their feelings and what they think about their sibling's illness. As a result, they may act out or be very dramatic (sometimes even faking illness or acting younger than they are, for example) to get their parent's attention. They can also be very emotional — angry, jealous, sad, fearful, guilty. There may also be some embarrassment when their peers start making comments about their sick sibling.

Studies show that without proper attention, these children are at increased risk of health problems, as well as psychosocial difficulties. They may suffer depression, anxiety, or other disorders. This can stem from the pressure of the uncertainty of the sibling's condition, the fact that life may be upside down, and the realization that responsibilities will increase in order to manage the household.

There are things that can be done, however, and the good news is that sometimes illness brings families closer together. One key thing to do is explain to your other children the condition that your sick child has and explain why it requires so much time away from home at appointments are in the hospital.

Maintain structure at home, while also being flexible. Be as organized as you can be, and have a schedule so siblings know who's at the hospital and when, and who's fixing dinner, picking the kids up from school. Be flexible but strive to maintain a sense of balance in your family.

Schedule special "family time" together and make a conscious effort not to focus on your sick child's condition during family time. Communicate often and meaningfully to reinforce the family relationship. In terms of attention, get your sick child to share their toys with their siblings, and ask relatives to focus equally on all your children.

Be hopeful and encourage your kids to have positive thoughts. If they're old enough, teach them stress management. If a child really seems to not be coping well with their sibling's illness, get them some help by way of a counsellor. You should definitely get help if they are demonstrating destructive or self-destructive behaviours.

Last updated: December 14th 2009