Family Developmental Charts

Parent

Emotional Concerns

Physical 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 Concerns

Physical 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 activities

Infant/Pre-schooler 

Emotional Concerns

Physical 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 activities

Parent 

Emotional Concerns 

Physical 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 Concerns 

Physical 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

Parent 

Emotional Concerns 

Physical Concerns

• sad feelings because your teenager blames you for his heart diseas
• 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 Concerns

Physical 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