Emotional and Physical Development Charts: Children's Heart Institute

Emotional and physical challenges often occur in a family because of a child's heart problem.

The Heart Institute at UPMC Children's Hospital of Pittsburgh designed charts of these challenges and common concerns.

About These Charts

We've arranged the charts based on the child's age:

  • Infant to preschool.
  • School-age (5 to 12 years old).
  • Teens.

We further split each chart into two columns:

  • Concerns and problems of the parent and of the child.
  • Coping and problem-solving for the parent and for the child.

The statements under each column are a collection of many families that have gone through what you're going through. They can help you understand the feelings and situations that may be part of living with your child's heart disease.

Factors that may affect concern and coping statements

Your child's:

  • Age and IQ.
  • Character traits.
  • Type of heart disease.

Your family's:

  • Ways of solving problems.
  • Support network of relatives and friends.
  • Style of parenting and living.
  • Financial resources.

If your family has a problem with these or any other issues, the Heart Institute staff is here to help you.

Infant/Pre-School Family Development Chart

Prime tasks

Parent: accepting their child's heart defect.

Child: growing into childhood.

Parent concerns

Emotional Concerns

  • Anger and grief your baby was born with heart disease.
  • Constant doubt about knowing the difference between normal and abnormal behavior in their baby.
  • Feeling burdened and overwhelmed by their baby's heart disease and fears of their death.
  • Worried that others can't or won't accept their newborn and their health problems.
  • Guilt over which parent is to blame for your child's heart defect.
  • Trouble learning about treatments, tests, surgeries, and medicines their child may need.
  • Problems sorting out medical facts from myths.
  • Worrying about treatment costs.
  • Placing limits on their baby because of worry about the heart problem.
  • Not using babysitters or others for fear they won't provide proper care.
  • Feeling tense and distant from their baby.

Health Concerns

  • Fear their baby will have a heart attack and die suddenly.
  • Worry their baby's heart disease will hinder normal mental growth.
  • Concern their baby's heart disease will cause problems with vaccines.
  • Worry their baby will be more prone to germs and illness.
  • Feeling guilty about sleeping with their child.
  • Concern over how hospital visits and stays impact their baby.

Parent coping with their infant's/preschooler's heart disease

Emotional concerns

  • Realizing how normal their baby is, even with a heart problem.
  • Knowing and accepting neither parent caused the heart problem.
  • Listening to their partner's concerns and fears about your child's diagnosis and treatments.
  • Keeping the rest of their life together.
  • Helping grandparents and others understand and accept the diagnosis.
  • Feeling at ease with letting others be with their baby.
  • Building a relationship of trust with the Heart Institute staff.
  • Taking time with their partner away from their baby.
  • Meeting other parents who raised a child with heart problems.

Health concerns

  • Knowing the heart is the strongest muscle in the body.
  • Learning their baby's crying usually won't hurt their heart and is vital for them to communicate.
  • Knowing heart disease will not affect their baby's mental development.
  • Trusting their baby will limit their own activity.
  • Making medicine, treatment, visits to the Heart Institute part of life with their child.
  • Staying with their baby or child in the hospital and helping to keep a normal home routine.
  • Supporting their child's potential by providing a stimulating physical and social setting.
  • Asking hospital staff for permission to stay with their child during treatments.

Infant/preschooler concerns

Emotional concerns

  • Having unusual trouble following daily routines.
  • Having trouble being apart from parents.
  • Being more fussy than healthy babies.
  • Dealing with sibling rivalry because of special attention.
  • Feeling parent's tension and distancing

Health concerns

  • Issues with regular eating and sleeping patterns.
  • Problems with infant motor skills (i.e., creeping, crawling) if heart disease is severe.
  • Delayed toilet training because of hospital stays, poor height, or weight gain.
  • Resistance to taking medicine.

Infant/preschooler coping statements

Emotional concerns

  • Strong and consistent family support of normal activity and development.
  • Helping siblings with their feelings of rivalry.
  • Being able to provide support, yet set limits, for the infant/preschooler during hard times.

Health concerns

  • Starting to form a unique personality.
  • Displaying increased motor and sensory skills.
  • Being happy with quiet play when active play is too strenuous.
  • Adapting to most of their heart disease symptoms and limits.
  • Finding charming ways to get the attention and help of others.
  • Learning to comply with doctors and taking medicine.
  • Gaining skills that make up for any physical limits of their heart disease.

School-Age Family Developmental Chart

Prime tasks

Parent: getting perspective on their child's heart problem.

Child: being a part of the gang, in spite of their heart disease.

Parent concerns for their child with heart disease

Emotional concerns

  • Worry about their child's future and normal life span.
  • Sad their child is different from others their age.
  • Be too protective of their child.
  • Concern about how family, teachers, and friends will accept their child.
  • A lingering feeling of guilt about being at fault for their child's heart disease.
  • Concern about health care costs and access to treatment.
  • Missing life events because of giving their attention and time to your child's heart problem.

Health concerns

  • Worry about growth delays.
  • Worry their child might not be able to keep up with school tasks and friends.
  • Worry school and friendship pressures may cause their child to wear themselves down.
  • Fear that teachers and others will not accept their child's limitations.
  • Tension because their child can't take part in some family activities, like bike rides or hiking.
  • Increased family stress because of arguments about taking medicines and hospital visits.

Parent coping with their school-aged child's heart disease

Emotional concerns

  • Keeping an open line of communication with their partner.
  • Knowing that heart disease is rarely inherited and shouldn't affect plans to have more children.
  • Adjusting to their child's changing treatment plans.
  • Sorting out positive and negative feelings about the hospital and staff.
  • Keeping their family's hopes, expectations, and routine normal.
  • Helping their child accept that heart disease isn't a punishment.
  • Acting as an advocate for their child's normalcy and special needs in the school system.
  • Forming a special relationship with a trusted health care worker.

Health concerns

  • Continuing to watch growth and development and accept delays.
  • Trusting their child will not overexert.
  • Starting to share with the child about their heart disease and treatment.
  • Helping their child see the many things about them that are normal.
  • Managing their child's Heart Institute appointments and drugs.
  • Urging their child to take part in Heart Camp and other activities.

School-aged child's concerns

Emotional concerns

  • The adverse effects of testing and treatment on feeling secure and confident.
  • Anger and confusion over limits imposed by heart disease.
  • Worry about being different and feeling secluded from friends.
  • Feeling their heart problem and treatments are punishment.
  • Stress and worry over visits to the Heart Institute and treatments.
  • Acting older or younger than their age to deal with the scary aspects of heart disease.

Health concerns

  • Trouble keeping up with friends in school and sports.
  • Being unable to take part in family and school activities.
  • Distress in extreme hot or cold.
  • More prone to infections.
  • Absent from school more than healthy children.
  • Withdrawal from school if their heart disease is severe.

School-aged child's coping statements

Emotional concerns

  • Starting to learn that teasing from a schoolmate is that person's problem.
  • Beginning to trust doctors, nurses, and other staff (because their parents trust them) and accept exams and treatments.
  • Talking with parents and others about their heart problem and its impact on lifestyle.
  • Knowing their heart problem isn't anyone's fault.
  • Finding and enjoying hobbies that aren't too stressful.

Health concerns

  • Talking with parents and others who know about their heart disease and treatment.
  • Knowing the fact about their medicines and being willing to take them.
  • Being willing to come for Heart Institute exams.
  • Finding helpful friends and interests that they enjoy.
  • Learning it's OK to ask their care team questions and request “time out" from treatments.
  • Meeting other kids with heart problems.
  • Starting to talk with doctors, teachers, and friends about having a heart problem.

Teen Family Development Chart

Prime tasks

Parent: giving their teen control of their heart disease.

Child: taking charge of themselves and their heart problem.

Parent concerns for their teen with heart disease

Emotional concerns

  • Sad because their teen blames you for their heart disease.
  • Confusion about what limits they need to set.
  • Worry about their teen's ability to finish school, find a job, or get accepted by the military.
  • Mixed feelings about their teen taking a job and leaving home.
  • Concern their teen won't go to doctors' appointments, take their medicine, or maintain a healthy lifestyle.
  • Tension and worry because their teen won't tell them about their symptoms and listen to their advice.
  • Worry about the costs of their teen's continued care and being able to get health insurance.
  • Concern their teen won't become fiscally independent due to their heart disease.

Health concerns

  • Continued concern over their teen's growth and life span.
  • Worry that sex will be a strain on their teen's heart.
  • Fears that getting pregnant could be life-threatening for their daughter.

Parent coping with their teen's heart disease

Emotional concerns

  • Staying in touch with special Heart Institute staff and other families whose kids have heart disease.
  • Giving their teen control of talking with the Heart Institute staff about treatments, lifestyle, or other issues.
  • Seeing their teen become self-sufficient and taking charge of their own lifestyle, money, friendships.

Health concerns

  • Making joint decisions with their teen about heart disease treatment.
  • Helping their teen form heart-healthy habits.
  • Talking with and making sure their teen understands their heart problem and what the future may hold.

Teen's concerns about their heart problem

Emotional concerns

  • Anger about being born with heart disease.
  • Worry about their heart disease getting worse and the possibility of death.
  • Blaming parents, most often their mom, for their heart disease.
  • Concern about dating and finding acceptance.
  • Worry about getting behind in school, losing jobs, or having fewer career choices.
  • Feeling sad about their heart defect or oppressed by their health worries.
  • Closing themselves off from friends and loved ones.

Health concerns

  • Dread over Heart Institute visits, treatment options, and the need for medicine.
  • Feelings of shame and anger about their body development.
    Worry about having sex and how life-threatening it may be.
  • Concern they might pass their heart problem on to their children.
  • Belief that they'll have a shortened life span.
  • Fear of not being able to manage their heart problem without their parent's help.
  • Increasing worry about the cost of treatment

Teen's coping with heart issues

Emotional concerns

  • Taking their heart problem and its limits into account when planning activities and their future.
  • Accepting the many ways heart disease makes life different.
  • Feeling self-sufficient and able to cope.
  • Strengthening bonds with members of the Heart Institute staff.
  • Talking about their heart problems and sharing plans with an accepting, loving partner.
  • Letting friends and parents help when they feel sad.

Health concerns

  • Finding a fulfilling job that doesn't cause strain on their heart.
  • Talking with Heart Institute staff about the long-term impact of their heart disease.
  • Planning for follow-up care at the Heart Institute.
  • Accepting their looks and any limits heart disease places on their body.