Optimizing Neurodevelopment & Supporting Infant Gross Motor Outcomes Toolkit

Section Outline

  1. Executive Summary

  2. Background & Scope

  3. Key Concepts Supporting Neurodevelopment

    • Developmental Screening

    • Supportive developmental care practices

    • Empowering parents

    • Ongoing involvement in therapy

  4. Intervention Strategies By Development Phase

  5. Deeper Dive Into Valuable Interventions

    • Tummy Time

    • Holding and Skin to Skin

    • Range of Motion Exercises

    • Equipment Considerations

  6. Quality Improvement: Gross Motor Improvement Project

  • Project History and Detail

  • Key Driver Diagram (KDD)

  • Project Data

  • Conclusions: Project Learnings

The Optimizing Neurodevelopment & Supporting Infant Gross Motor Outcomes Toolkit

Neurodevelopmental disability is a significant concern for individuals with complex congenital heart disease (CHD) across the lifespan. Gross motor delays are common in infants with single ventricle CHD, with greater than 60 percent of NPC QIC-enrolled infants not scoring “on target” at 12 months on the Ages & Stages Questionnaire (ASQ) developmental screener. The early identification and treatment of developmental concerns, starting in infancy, can positively impact developmental trajectory for these infants. 

This toolkit was created to share intervention strategies to promote optimal gross motor outcomes and describes supportive developmental care practices for both hospital and home settings

NPC-QIC would like to extend a special thanks to our project co-leaders for their work developing this toolkit: Julia Anixt, Lauren Malik, and Jennie Briend.

Click here to access the NPC-QIC Gross Motor Outcomes Toolkit

“Parents are eager to support their
baby’s development. Too often
parents feel that their concerns about
development are not prioritized by
care teams. Development takes the
back seat when babies have such
serious heart conditions. Parents want
strategies and therapies to support
their babies as early as possible.”
— Jennie Briend, Parent

Intended Audience

The target audience for this toolkit is interdisciplinary professionals and parents caring for infants with single ventricle CHD.  The information in this toolkit can also be shared with infants’ medical home providers, early intervention professionals, and key stakeholders, such as hospital administrators.