CARING FOR A CHILD:
The possibility of deterioration or
premature death associated with cardiomyopathy creates
unique social and emotional issues for affected families.
The fear and anxiety from living with a chronic illness
and the lack of predictability can make raising a child
with cardiomyopathy more challenging. As a parent, it is
natural to feel a mixture of intense emotions such as fear,
anxiety, sadness, anger, and guilt at different times:
- Fear:You may be afraid of
what may happen next especially if you suspect that
your child's condition may deteriorate. You may fear
that you will not be able to handle an emergency or
that your child may actually die.
- Anxiety: You may feel a tremendous
amount of anxiety along with a preoccupation with your
child's health due to the absence of a real cure and
the unpredictability of the disease as your child grows.
You may also be anxious about the high cost of medical
care that your child needs. Eventually this state of
anxiety and helplessness may evolve into depression.
- Sadness: You may grieve for
what is lost - a carefree family life and good health
for your child. You may yearn for the time when things
were okay and you did not have to worry so much. As
your child grows, you may grieve for your child's inability
to engage in certain activities or over social issues
arising from peer pressure.
- Anger: You may feel angry
at God for allowing this to happen and letting you
down. In some instances you may feel frustrated at
life's unfairness and even feel anger seeing families
with healthy children. At some point, you may resent
the amount of time and attention that your child needs
from you. You may also feel overwhelmed and frustrated
when the disease does not respond to treatment or the
- Guilt: You may feel guilty
that you could have done something to prevent your
child's disease or that the disease was not diagnosed
sooner. If there is a strong family history of the
disease, you may feel guilty for having transmitted
the disease to your child. When your child encounters
medical or social problems, you may also feel guilty
for not being able to do more.
These are all common feelings faced
by families with children with a chronic illness. You should
give yourself time and space to accept the situation and
learn how to express your feelings before they consume
your life. Continually dwelling on these feelings can rob
you of the energy you need to cope with the present and
to plan for the future.
Handling Your Feelings
To avoid becoming a prisoner of the
disease, it is important to enjoy your child and conduct
your life as normally as possible. There are several ways
to deal with your new situation and maintain a positive
outlook: 1) learn more about the disease and diagnosis,
2) find support from others and 3) take care of your physical,
mental and spiritual well being.
Gathering your own information via the Internet or local library may alleviate
some fear of the unknown and allow you to be realistic about the future. Learn
everything you can about pediatric cardiomyopathy, your child's diagnosis,
tests that have been or will be performed, and available treatments. Some families
also find it useful to learn about caring for someone with a chronic disease.
There is an article, "Coping
Tips for Caregivers: A to Z," that gives practical advice about how to
deal with the long-term stress of caring for someone with heart disease.
When managing your own feelings, remember that you are not alone. During stressful
times, it is easy to forget about your relationship with your spouse, your
other children or other supportive family members. However, these relationships
need equal attention to maintain a solid, caring family unit. Spend quality
time with the important people in your life and keep the lines of communication
open. If you or your family needs additional support, professional counseling
can help everyone to better cope with the illness. Counseling may involve the
whole family or an individual and can either be private or in a group. You
can get service approval and a referral list from your health care provider
for qualified psychologists and marriage, family and child counselors.
Seeking the advice of families who have dealt with a similar diagnosis can
be encouraging and comforting. Group support can be especially helpful in the
beginning stages and on a long-term basis. Although there may not be a support
group in your community specifically for pediatric cardiomyopathy, there are
other groups with similar concerns such as chronically ill children and children
with congenital heart disorders. The Children's Children's Cardiomyopathy Foundation
maintains a list of support groups on the Links
and Resources section, and your medical center or local chapter of the
American Heart Association may have other recommendations.
If your child has an advanced stage of cardiomyopathy, it is easy to forget
about tending to your own physical and mental well being while caring for your
child. During these times, you need to remember to take care of yourself and
maintain a positive attitude. This means arranging some personal time, getting
sufficient sleep, eating balanced meals and finding an outlet for stress. Some
effective ways of coping with stress include exercise, sports, meditation,
and breathing and relaxation exercises.
Dealing With Your Child's
As your child gets older, he/she may
face different social and emotional concerns related to
the disease. The best way to handle this challenge is to
give some thought in advance as to how you will respond
to each situation. Common feelings experienced by younger
children are fear of what may happen to them or anger over
less independence (related to taking medication, visiting
the doctor or eating certain high calorie food). Older
children may resent not being able to participate in certain
activities or feel depressed because they are "different" from
other children. Children approaching puberty may be more
concerned with their appearance (if smaller than average)
and ability to fit in with peers.
While your child passes through these psychological stages, you should try
to manage your own feelings and present the positive so that your fears and
sadness do not interfere with your child's coping process or outlook on life.
Children are remarkably astute at picking up emotional cues of those closest
to them, even though they may not talk about it. You can help your child overcome
his/her fear of the unknown by educating him/her about what to expect. This
may entail checking out a book about the disease at the local library, drawing
or writing about it, or attending a hospital's pediatric program (i.e. Child
Life Program) to better understand medical tests and procedures.
When your child is old enough to understand, explain in an age appropriate
way why he/she has surgical scars, needs to take medication and needs to visit
a pediatric cardiologist. Encourage your child to become involved in his/her
own care and to be aware of certain warning signs for medical attention. As
a result, your child will more likely be confident and positive about living
with his heart condition.
Creating a climate that encourages and supports shared feelings can also help
your child deal with his/her disease. Talk about sensitive topics in a time
and place that is calm and is conducive to open communication. A young child
may ask you difficult questions such as "Am I going to die?" or "What happens
if the doctor can't fix my heart?". Experts advise parents to answer with a
simple but truthful statement instead of providing a direct or complicated
response. Young children generally do not need a detailed answer but they do
need to feel that they can trust you to respond. On the other hand, older children
may be reluctant to discussing their school or social problems, but you should
still let he/she know of your availability to talk.
Another important point to keep in mind is that children with cardiomyopathy
need to be made to feel a part of their peer group and not isolated because
of their illness. Although it is understandable for parents to become overly
protective, it is better for their child's development and self-image if parents
support their child's efforts to live as normal of a life as possible. Therefore,
parents should encourage their child to do all that he/she is capable of as
long as it does not negatively affect his/her condition, such as avoiding medications
or engaging in activities that are physically harmful.
If you find your child appearing lonely or feeling isolated, you can try putting
him/her in contact with another child with cardiomyopathy or a congenital heart
defect. Your child's cardiologist, local children's medical center or support
groups are good sources of contact. There are also several camps especially
for children with heart disorders. A listing of these heart camps can be obtained
through the Congenital
Heart Defects Resource Page.
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