Our Services

Family Developmental Charts

Emotional and physical challenges often occur in a family because of a child’s heart problem. These challenges have been arranged in charts according to the child’s age. Each chart is further divided into columns. The Parent Concerns and Child Concerns columns list common problems. The Parent Coping and Child Coping columns suggest possible solutions.

The statements under each column are a collection of experiences of many families. They can help you understand the feelings and situations that may be part of your experience in living with heart disease.

Various factors influence which of the concern/coping statements might pertain to your family situation. These include:

Your child’s:

  • Age
  • IQ
  • Personality
  • Type of heart disease

Your family’s:

  • Ways of solving problems
  • Availability of relatives and friends
  • Style of parenting
  • Financial resources
  • Style of living

If your family has a problem with these or any other issues, the Heart Institute staff is available to help you. In addition to the cardiologists and surgeons, other caregivers in the department include the nurses, social workers and other parents whose children have heart problems. You will meet them as you come for examinations and treatments.

Infant/Pre-School Family Development Chart
School-Age Family Developmental Chart
Adolescent Family Developmental Chart

Infant/Pre-School Family Development Chart

Primary Task
Parent: accepting the illness
Child: growing into childhood

Parent

 Emotional

 Physical 

Concerns: Concerns:
  • anger and grief your baby has been born with heart disease
  • constant doubt you know the difference between normal and abnormal behavior in your baby
  • feeling burdened by overwhelming concerns about your baby’s heart disease and fear of his death
  • worry family and friends can’t accept your newborn and his problems
  • guilt over which parent is to blame
  • difficulty learning about treatments, tests, surgeries and medications
  • difficulty sorting out medical facts from fantasies
  • worrying about treatment expenses
  • placing restrictions on your baby because of worry about the heart problem
  • fear of using babysitters because they would not be able to care for your baby
  • feeling tense and distant from your baby
  • fear your baby will have a heart attack and die suddenly
  • worry your baby’s mental development will not be normal because of the heart disease
  • concern your baby’s heart disease will cause problems with immunizations
  • worry your baby will be more susceptible to germs
  • feeling guilty about sleeping with your child
  • concern over the impact of hospitalization on your baby
Coping: Coping:
  • realizing how normal your baby is, even with a heart problem
  • understanding neither parent caused the heart problem
  • listening to your partner’s concerns and fears about the diagnosis and treatments
  • keeping the rest of your life together
  • helping grandparents and others understand and accept the diagnosis
  • feeling comfortable allowing others to be with your baby
  • establishing a relationship of trust with the Heart Institute staff
  • taking time with your partner away from your baby
  • meeting other parents who raised a child with similar problems
  • understanding the heart is the strongest muscle in the body
  • learning crying usually will not hurt your baby’s heart and is an important way for him to communicate
  • understanding heart disease will not affect your baby’s mental development
  • trusting your baby will limit his own activity
  • making medication, treatment procedures and Heart Institute appointments part of life with your child
  • staying with your baby/child overnight if he is admitted to the hospital maintaining a normal routine at home
  • supporting your child’s potential by providing a stimulating physical and social environment
  • asking hospital staff for permission to stay with your child during difficult procedures
Infant/Pre-Schooler

Emotional

Physical

Concerns: Concerns:
  • experiencing unusual difficulty establishing daily routines
  • having trouble separating from parents
  • being more fussy and irritable than healthy babies
  • encountering additional rivalry from siblings because of special attention
  • feeling parent’s tension and distancing
  • difficulty with regular eating and sleeping patterns
  • difficulty with infant motor activities (i.e. creeping, crawling) if heart disease is severe
  • delayed toilet training because of interruptions with hospitalizations poor height and weight gain
  • resistance to taking medications
Coping: Coping:
  • strong and consistent family support of baby’s normal activity and development
  • helping siblings with their feelings of rivalry
  • being able to provide support, yet set limits, for the infant/pre-schooler during difficult times
  • ability to develop a unique personality
  • displaying accelerated cognitive development
  • being happy with quiet play when active play is too strenuous
  • adapting to most symptoms and limits
  • developing charming ways of getting the attention and help of others
  • learning to cooperate with visits to doctors and taking medications
  • compensating for physical limitations by becoming more skilled in other activitie

Top

School-Age Family Developmental Chart

Primary Task
Parent: getting perspective on illness
Child: being a part of the gang, in spite of heart disease

Parent

Emotional

Physical

Concerns: Concerns:
  • uncertainty about child’s future abilities and normal life span
  • sadness child is different
  • tendency to be over-protective toward child and his activities
  • concern about child’s acceptability to family, teachers and friends
  • lingering feeling of guilt about responsibility for child’s heart disease
  • concern about medical expenses and availability of treatment
  • missing life opportunities because of attention, time and concern given to child’s heart problem
  • uneasiness about growth delays
  • sadness your child will be unable to keep up with school tasks and friendships
  • worry school and friendship pressures may cause your child to overexert
  • misgivings teachers and others will not be accepting of your child’s limitations
  • tension within family because your child cannot participate in athletic activities
  • increased family stress because of arguments about taking medicines and hospital visits
Coping: Coping:
  • continuing communication between parents
  • understanding that heart disease is rarely inherited and should not affect plans for other children
  • adjusting to changing treatment plans
  • sorting out positive and negative feelings about the hospital and staff
  • keeping your family’s hopes, expectations and activities normal
  • helping your child understand that heart disease is not a punishment
  • acting as an advocate for your child’s normalcy and special needs in the school system
  • developing a special relationship with a trusted health care worker
  • continuing to watch growth and development and accept delays
  • trusting your child will not overexert
  • beginning to share information with your child about his heart disease and treatment
  • helping your child see the many things about him that are normal
  • supervising Heart Institute appointments and medications for your child
  • encouraging your child to participate in Heart Camp and other appropriate activities

School-Age Child

Emotional

Physical

Concerns: Concerns:
  • impact of medical procedures and testing causing insecurity and lack of self-confidence
  • anger and confusion over limits imposed by heart disease
  • worry about being different and feeling isolated from friends
  • feeling the heart problem and its treatment are punishment
  • anxiety over visits to the Heart Institute and treatments
  • acting older or younger than age as a way to deal with the frightening aspects of heart disease
  • difficulty in keeping up with friends in school and sports
  • being unable to participate in family and school activities
  • distress in extreme hot or cold
  • susceptibility to infections
  • more school absences than healthy children
  • withdrawal from school if heart disease is severe
Coping: Coping:
  • beginning to learn teasing from schoolmates is the other person’s problem
  • beginning to trust doctors, nurses and other medical staff (because parents trust them) and accept examinations and treatments
  • talking with parents and others about the heart problem and its impact on lifestyle
  • understanding the heart problem is not anyone’s fault
  • finding and enjoying activities that are not too stressful
  • talking with parents and others who understand the heart problem and its treatment
  • understanding medicines and being willing to take them
  • being willing to come for Heart Institute examinations
  • finding friends and activities that are enjoyable and helpful
  • learning it’s OK to ask questions of the medical staff and request “time out” from treatments
  • meeting children with similar health problems
  • beginning to talk with doctors, teachers and friends about having a heart problem

Top

Adolescent Family Developmental Chart

Primary Task
Parent: giving control of illness to adolescent
Child: taking responsibility for self and heart problem

Parent

Emotional

Physical

Concerns: Concerns:
  • sad feelings because your teenager blames you for his heart disease
  • confusion about limits you need to set
  • worry about your teenager’s ability to finish school, get a job or be accepted by the military
  • mixed feelings about your teenager getting ready to take a job and leave home
  • concern your teenager will not keep medical appointments, take medicine or maintain a healthy lifestyle
  • tension and worry because your teenager will not tell you his symptoms and will not listen to your advice
  • worry about the expenses of continued medical treatment and ability to obtain insurance coverage
  • concern your teenager will not become financially independent due to heart disease
  • continued concern over your teenager’s growth and life expectancy
  • anxiety sexual activity will be a stress for your teenager’s heart
  • fears pregnancy will be life-threatening to your daughter
Coping: Coping:
  • continuing special relationships with Heart Institute staff and other families whose children have heart disease
  • giving your teenager responsibility for communication with the Heart Institute staff about treatments, lifestyle, etc.
  • seeing teenager/young adult as self-sufficient and responsible for his own lifestyle, financial support, friendship networks
  • ability to make mutual decisions with your teenager about treatment of heart disease and lifestyle
  • talking with your teenager so he understands his heart problem and what the future may hold
Adolescent

Emotional

Physical

Concerns: Concerns:
  • anger about being born with heart disease
  • worrying about the heart’s functioning and the possibility of death
  • feeling parents, especially mother, caused the heart problem
  • concern about finding acceptance in a dating partnership
  • getting behind in school
  • lost jobs and career choices
  • feeling depressed
  • adopting loner behavior
  • feeling saddled by the heart defect and related worries
  • dread over Heart Institute appointments, treatment recommendations and need for medication
  • feelings of shame and anger over body development
  • confusion about how life threatening sexual activity may be
  • concern the heart problem may be passed on to children
  • belief life expectancy will be shortened
  • fear of not being able to manage heart problem without parent’s help
  • increasing worry about cost of treatment of heart disease
Coping: Coping:
  • considering the heart problem and its limits when planning activities and the future with important others
  • accepting the many ways heart disease makes life different
  • feeling self-sufficient and able to cope
  • strengthening relationships with members of the Heart Institute staff
  • sharing heart problems and other plans with accepting, loving partner
  • letting friends and parents help when feeling sad
  • finding a career that is satisfying and not too strenuous for your heart problem
  • talking with Heart Institute staff about the impact of heart disease on the future
  • planning for continued treatment of heart disease with Heart Institute staff
  • accepting appearance and limits heart disease places on body

Top

Last Update
March 25, 2013
  • Increase/Decrease Text Size
  • Print This Page
Last Update
March 25, 2013
top