Trigger Warning
Medically Fragile Infants & Congenital Heart Disease (CHD)
This case study explores the experiences of medically fragile infants with congenital heart disease (CHD), including complex medical interventions, prolonged hospitalizations, and the challenges faced by families and caregivers. It discusses life-threatening conditions, intensive medical procedures, and the emotional and ethical complexities of neonatal and pediatric care.
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I recognize that this content may be distressing, particularly for those with personal or professional connections to medically complex infants. Please prioritize your well-being,feel free to step away if needed and engage with the material in a way that feels safe for you.
Making progression visible while empowering parents in their
baby's care journey.
Challenge
Caregivers of infants with congenital heart disease navigate a fragmented discharge process across multiple teams, tools, and transitions.
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Lack of structure and visibility made it difficult for families to understand progress, coordinate with care teams, and feel prepared to transition home.
Outcome
Designed a coordinated system of tools and workflows to align caregivers and care teams throughout the discharge journey.
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This included:
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A caregiver workbook to guide progress and expectations
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A clinical care board to support team coordination and communication
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Together, these tools created shared visibility, improved alignment, and introduced a clearer sense of progression across the care experience.
Impact
Results from 4-month clinical pilot:
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64% of parents reported improved ability to track their child’s progress
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90% would recommend the tools to other families
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Increased likelihood of survival outside clinical settings by 40%
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Published in a peer-reviewed abstract (American Academy of Pediatrics, 2022)
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Workbook launched in English & Spanish, with broader rollout underway
Context
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Timeline: January 2021 – June 2021
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Client: Texas Center for Pediatric Congenital Heart Disease (Dell Med)
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Role: Lead Service Designer & Researcher
Understanding the System
Caregiver discharge is not a single moment—it is a complex system of interactions across clinical teams, tools, and environments. To understand where breakdowns occurred, I mapped the end-to-end experience across caregivers and care teams, focusing on how information, responsibilities, and decisions moved through the system.
01 — Fragmented
Touchpoints
Caregivers moved between multiple environments—clinic visits, ICU stays, and home preparation—without a consistent structure to guide them.
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Information was delivered inconsistently across digital tools, paper materials, and verbal instructions.
02 — Disconnected Data & Communication
Critical patient information was distributed across teams and systems, making it difficult for caregivers and clinicians to maintain shared visibility.
This led to repeated questions, missed context, and coordination gaps during transitions.
03 — High-Stakes Complexity
Discharge required aligning clinical protocols, caregiver readiness, and compliance requirements.
Without clear coordination mechanisms, teams relied on manual workarounds, increasing cognitive load and risk during an already stressful process.
From Insight to System Response
What became clear was that the problem wasn’t a single breakdown—it was a lack of structure across the entire journey.
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Discharge wasn't a moment, it was a system of interactions unfolding over time.
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This reframed the work: not improving individual touchpoints, but to designing a shared structure that could align caregivers and care teams throughout the experience.
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This shift fundamentally changed the solution space.
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We introduced a coordinated system of tools designed to provide both overarching structure and progressive guidance throughout the discharge journey.
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Rather than adding more information, the goal was to create shared visibility, reinforce alignment, and help caregivers and clinicians move through the process with a clear sense of progress.
Designing a Coordinated System
A system-level concept illustrating how caregivers, care teams, and tools connect across the discharge journey.
The System was brought to life through two core artifacts.
Clinical Board Prototype
Caregiver Workbook Excerpt
Guides caregivers through each stage with clear expectations and progress tracking.
Creates real-time shared visibility, enabling coordinated decisions across care teams.
Service Blueprinting
To ensure the system could scale beyond a concept, I developed a service blueprint to define how these tools integrate into real-world workflows.
This case study includes both the system outcome and the full design process—continue below for a deeper dive.
" I show up everyday
at rounds and try my best to be a doctor."
The context Behind the complexity
Children under 5 experience significantly higher mortality rates—
making the transition from hospital to home
one of the most critical moments in care.
1 in every 100 babies in the U.S. is born with congenital heart disease (CHD), and many require surgery within their first year of life.
For families navigating single ventricle CHD, this often means prolonged hospitalization, complex care coordination, and an high-stakes transition to home.
A closer look at mortality rates by age reveals a critical pattern:
Mortality Trends in Congenital Heart Disease
Given the complexity and stakes of this transition, I needed to understand how discharge
actually works in practice not just how it’s designed to work.
Research at a glance — combining qualitative insights with in-context observation to uncover systemic gaps in discharge coordination.
Research Approach
To understand the discharge experience, I examined the system from multiple perspectives—patients, caregivers, and care teams—to identify breakdowns, gaps, and opportunities for improvement.
Research Focus
• How does the discharge process work today?
• What does the experience feel like for families?
• Where do breakdowns occur across teams and systems?
• What information is missing or unclear during the transition home?
Methods
• Stakeholder Interviews (25+)
• Clinical Observations (15+ hours)
• Journey Mapping
• Artifact Analysis
• Affinity Diagramming
The diagnosis of single- ventricle (SV-CHD) starts years of complex medical interventions. These infants are medically fragile and require multiple surgeries and hospitalizations in the Cardiac intensive care unit. (CVICU)
The Journey
Interstage Journey Map
The interstage period,between the first surgery after birth and the second surgery months later, is one of the most fragile and high-risk phases of care.
To make sense of this complexity, I created a journey map that synthesizes clinical workflows, caregiver experiences, and key transition points.
This artifact made it possible to identify where coordination breaks down,and where families feel the most overwhelmed.
This revealed three critical patterns:
Key Insights
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The interstage period is not a single transition, it is a series of fragile handoffs across teams, environments, and expectations.
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Clinical teams assess cliniclal readiness, but caregiver readiness is evaluates inconsistently- introducing hidden risk at discharge.
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Critical Information is fragemented across teams and artifacts, making it difficult for families to form a clear mental model of care at home.
Critical Insight
A critical moment: "The Test"
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Caregivers are required to complete a “
test” demonstrating their ability to manage medical equipment and care tasks before discharge.
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However, the same materials describe this as a “learning experience, not a test.”
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This contradiction creates confusion and pressure during an already high-stress transition, where caregivers feel evaluated, but not clearly supported.
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The gingerbread man is placed in all patient rooms to help caregivers understand and visualize placement of medical devices and tubing.
"There was nowhere to look and see what we had accomplished or how far we still had to go"
-Single Ventricle Heart Patient
Insights Developed
At the start of this research, I set out to understand how discharge actually works in practice,how it feels for families, how it operates across care teams, and where breakdowns occur.
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What emerged were not isolated issues, but a set of systemic patterns shaping the discharge experience.
The high stakes of caring for a medically fragile child complicates roles and responsibilities
Parents must quickly take on clinical responsibilities, shifting from caregiver to care provider. This blurs traditional roles and increases cognitive and emotional load.
Every child's journey is unique, but families still need guideposts along the way.
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The care path is nonlinear and unpredictable, yet families need clear milestones and expectations to orient themselves and track progress.
Being in the ICU means it's never not an emergency, even as clinical status changes.
Being in the ICU means it’s never not an emergency
Even as clinical stability improves, the environment maintains a constant sense of urgency, making it difficult for families to transition psychologically.
Disparities in resource and care delivery make everything more difficult.
Care teams and caregivers both seek consistency and structure
Workarounds and informal tools reveal a need for standardized communication, clearer ownership, and better coordination across teams.
Both caregivers and care team yearn for consistency and standardization to alleviate anxiety.
Disparities in access and communication amplify challenges
Language barriers and limited resources create unequal experiences, making already complex care even harder to navigate.
"We spend a lot of time with these families and want to do everything we can to help them be successfull.'
Pediatric Cardiologist
Ideation
As a team we ideated in response to several design goals, articulated as “how might we” statements, and came up with many potential concepts which we narrowed down to an initial short list.
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Using a 2x2 matrix activity we asked the client team to individually place each of the final design concepts and then compared the ranking followed by facilitated open discussion. This allowed us to come to shared vision and provided guidance regarding which concepts should be prioritized (depicted in yellow).
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Better facilitate milestones and transition during interstage.Normalize the non-linearity nature of the process.
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Promote elements of joy and normalcy as new parents.
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Improve care coordination and create a more seamless experience.
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Empower caregivers in their new roles as care stewards.
How Might We....
Final Concept: A Caregiver- Centered Journey System
Instead of a single solution, I designed a system of tools that work together to support families across the interstage journey — helping them understand where they are, what comes next, and how to navigate care with greater clarity and confidence.
Caregiver Worksheet
Purpose: Orientation + Tracking
Provides a structured way for caregivers to track milestones, responsibilities, and goals across the interstage period. Designed to support both clinical understanding and emotional reflection.
Pivot Point
After synthesizing research with the care team, one need became clear:
Families needed a simple, patient-centered way to understand and navigate a journey that is inherently complex and non-linear
The problem wasn’t just coordination — it was clarity, orientation, and confidence.
Story books & Keepsake Journal
Purpose: Emotional + Narrative Clarity
Parents must quickly take on clinical responsibilities, shifting from caregiver to care provider. This blurs traditional roles and increases cognitive and emotional load.
Clincal Care Board
Purpose: Visibility +
Makes clinical progress visible by externalizing key milestones, status changes, and next steps. Supports shared understanding between care teams and families, reducing confusion and improving coordination.
"Parents are thrown a lot of information. The workbook helps welcome parents while preparing then for home from the start."
iICU Bedside Nurse
Prototyping
We created low-fidelity prototypes and engaged both families and care teams in co-creation sessions to test early concepts.
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While initial designs helped reduce information overload, feedback revealed a critical gap — caregivers needed more clinical specificity, not less.
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This reframed our approach. Rather than simplifying the experience alone, we needed to better support caregivers in becoming confident participants in clinical care.
Testing Feedback
Three key themes emerged:
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Practical tools over emotional ones
Worksheets and care boards were prioritized over storybooks, despite strong emotional resonance.
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Need for deeper clinical integration
Families wanted tools that aligned directly with how care is actually delivered.
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Desire for consolidation
Caregivers preferred fewer, more integrated tools rather than separate artifacts.
Implementation
Theory of Change
Outline of short, mid, and long term outcomes through design implementation.
Service Outcome
In the end, we developed an interactive, highly detailed workbook tailored to assist families in navigating the non-linear progression of their journey, while also ensuring moments of normalcy are maintained. Additionally, we incorporated the redesigned care board to delineate the various stages of their interstage journey during their hospital stay.
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The care board and workbook feature color-coded stages aligned with medical pathways, incorporating familiar symbols such as the classic gingerbread man. Additionally, the workbook includes space for children to creatively express their own stories.
What Happened Next?
We were invited to speak at the heart conference to discuss out new designs and publish our work. Dell Children's decided to move forward with the design as well and apply it to other patient populations.
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It is used regularly with families to this day.
Takeaways
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Throughout the project we have learned that it's important to seek full perspective early on and work iteratively in the process
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We also learned how to give space and kindness with sensitive topics/ families.
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Throughout the process, I constantly asked “Who is the customer? Who is the user?” I came to understand that our “user” is an organization. That added layers of complexity because of the increased number of stakeholders, each one having their own needs and agendas. This came out during our usability interviews and manifested itself in thinking about different touchpoints/information.
Participating in this project was an extraordinary experience. Seeing its profound effect within such a sensitive community deeply resonated with the meaningful work I strive to pursue.
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Moreover, I want to extend my sincere appreciation to the incredible group of women I had the honor of working alongside—a team distinguished by their exceptional talent and unwavering supportiveness.