Patient and Family Resources for Pediatric Heart Patients
We know that caring for a child with a heart condition involves more than medical treatment — it affects the whole family.
At University of Iowa Health Care Stead Family Children’s Hospital, our Patient and Family Resources program is here to support you with education, practical tools, and emotional support at every step of your child’s care.
Support beyond the hospital
When your child has a heart condition, care doesn’t stop at clinic visits or hospital stays. Our team supports families well beyond the medical setting, helping with the practical details that make daily life easier and care more manageable.
Care coordinators assist with scheduling, care planning, and transitions between hospital and home. Nutrition specialists partner with families to support healthy growth and heart healthy eating. Together, these services help reduce stress and ensure families have the guidance they need at every stage of care.
Nutrition support for children with heart conditions
Infants and children with heart conditions often have unique nutritional needs. They may burn more calories, grow more slowly, or have difficulty taking in enough nutrition to support healing and development. Our pediatric dietitians specialize in cardiac care and understand the important role nutrition plays in recovery and long-term health.
Your child’s dietitian will assess growth patterns, intake, medications, and feeding abilities to create an individualized nutrition plan. This plan may include specialized formulas, feeding schedules, or dietary adjustments to address growth challenges or feeding intolerance. Our team works closely with families during hospitalization and continues support after discharge, offering practical strategies to promote healthy growth from infancy through young adulthood.
Comprehensive family-centered resources
No two families experience a heart diagnosis the same way. Our family-centered resources are designed to meet families where they are, offering connection, guidance, and continuity of care throughout childhood and beyond.
Families can connect through parent and peer networks and access specialized programs, including:
- Heart Friends. A peer-led support network connecting families of children with congenital or acquired heart disease for emotional, educational, and social support.
- Project ADAM. A community outreach program that helps schools prepare for sudden cardiac arrest emergencies through CPR training and AED awareness.
- Continuity of Care. A nurse-led coordination program that ensures smooth transitions from hospital to home and ongoing support for families managing complex medical needs.
Each program works alongside your child’s medical care to help families feel supported, prepared, and connected.
Our approach to care
Our approach is grounded in collaboration and compassion. We partner closely with families and your child’s medical team to ensure care is well coordinated and aligned with your child’s overall plan. By listening carefully, anticipating needs, and communicating clearly, we help families play an informed and active role in decision making.
Families also have access to educational materials, workshops, and community programs that support care at home, at school, and as children grow and become more independent.