1. Life of Family
1.1. Grief
1.1.1. Loss of healthy child
1.1.2. Impact on family life
1.2. Disconnection
1.2.1. From friends and family
1.3. Impacts ability to work
1.3.1. Increased care needs
1.3.2. Absences
1.4. Family relationship strain
1.4.1. Stress of caring for sick child
1.4.2. Lack of togetherness
1.4.3. Pressures of work
2. Mental
2.1. Family
2.1.1. Depression
2.1.2. resentment
2.1.2.1. Siblings not getting priorities
2.1.2.2. Need to care for sick child
2.1.3. anxiety
2.1.3.1. Prognosis
2.1.3.2. Financial
2.1.3.3. Coping
2.1.4. Guilt
2.1.4.1. Parents caused it
2.1.4.2. Taking time away
2.1.4.3. Wishing for a healthy child
2.1.5. Fear
2.1.5.1. Death
2.1.5.2. Life long need for care
2.1.5.3. Unknown
2.2. Child
2.2.1. Anxiety
2.2.1.1. what other think
2.2.1.2. Death
2.2.2. Depression
2.2.3. Fear
2.2.3.1. Unknown
2.2.3.2. Invasive tests/ procedures
2.2.4. Resentment
2.2.4.1. Being sick
2.2.4.2. Can do the same as others
3. Socially
3.1. Increase absence
3.1.1. Work
3.1.1.1. Loss of Job
3.1.1.1.1. Financial collapse
3.1.1.1.2. Stress looking for another job
3.1.2. Schoolling
3.1.2.1. developmental delay
3.1.2.2. poor social skills
3.1.2.3. lack of connections
3.1.3. Community
3.1.3.1. missed connections
3.1.3.2. Fun
3.1.4. Family
3.1.4.1. poor family connections
3.2. Unable to maintain friendships
3.2.1. hospitalisation
3.2.2. medical appointments
3.2.3. care needs of child
3.3. Isolation
3.3.1. Being in hospital
3.3.2. Fear of germs/illness from others
3.3.3. family and friends do not know how connect
4. Life of child
4.1. Developmental delay
4.1.1. Symptoms of heart failure
4.1.2. Social isolation
4.1.2.1. Shortness of breath or rapid breathing Dizziness and fainting Irregular or rapid heartbeat Abdominal bloating or swelling Chest pain Extreme fatigue
4.1.3. Missed schooling
4.1.4. Overprotective parents
4.1.5. Long hospital admissions
4.2. Increased mortality
4.3. Increase risk morbidity
4.3.1. fear of illness and germs
5. Life long medication
5.1. side affects
5.2. compliance issues
5.2.1. Both family and child
5.3. cost
5.4. Become ineffective
5.4.1. Transplant
5.4.2. Mechanical heart
6. regular GP/specialist visits
6.1. Time consuming
6.1.1. Long distances if live regionally
6.1.2. Need for time off work
6.2. Costly
7. Physical
7.1. Reduced energy
7.1.1. Decreased function of the heart
7.1.2. Increased 02 demand of myocardium
7.2. Failure to thrive
7.2.1. Increased energy demand of the body
7.2.2. Inability to sustain sucking/ feeding
7.2.3. Need for NG feeding
7.3. Breathlessness
7.3.1. Unable to play sports
7.3.2. Cant engage in strenuous activities with peers
8. Prognosis
8.1. 13% mortality 2 years post diagnosis
8.2. Death
8.2.1. lack of donors
8.2.2. Cardiac failure
8.2.3. myocardial infarction
8.3. Heart failure
8.3.1. Heart transplant
8.3.1.1. Risks of infection
8.3.1.2. Rejection
8.3.1.3. life long medication
8.3.1.4. sudden cardiac death
8.3.2. Mechanical heart
8.3.2.1. Risk infection
8.3.2.2. Death
8.3.3. Iv medications
8.3.3.1. Long hospital stays