OUR IMPACT
For medically complex babies,
care coordination isn't a nice-to-have.
It's the difference between 86% survival and 76%. And that's just the beginning.
PROGRAM SCALE
Real children. Real families. Real outcomes.
Behind every number is a medically complex baby who deserved — and received — a dedicated coordinator by their side.
1,200+
CHILDREN SERVED
Medically complex infants enrolled in LHL care coordination programs across five top-ranked Level IV NICUs since 2018.
500+
PROGRAM GRADUATES
Families who completed the program — meaning their child reached a healthier, more stable place and they have the skills to navigate complex care independently.
MEASURED PROGRAM OUTCOMES
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86% vs <em>76%</em>
86% 2-year survivability — compared to 76% without our program. In plain terms: our coordinators are helping babies live who otherwise might not.1
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0%
Zero families lost to follow-up in peer-reviewed study — when medically complex babies disappear from care, the consequences can be devastating. Our coordinators make sure that never happens.
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23
Median completed specialist appointments per patient in the first 3 months home — on top of medications, equipment, insurance, and sleepless nights.1
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96%
Of parents felt empowered to advocate for their child — families who arrived terrified and left confident.2
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70%
Of enrolled families face significant barriers to navigating care — families who, without a dedicated coordinator, may not make it through.1
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5
Top-ranked Level IV NICUs that have independently adopted and institutionalized the LHL model.
"These are at-risk families that would not make it, I believe, without a coordinator."
— Neonatologist, Lurie Children's Hospital
PEER REVIEWED RESEARCH
Independent science confirms what we see on the ground.
LHL's model has been validated in peer-reviewed journals and is now the subject of a multi-site NIH R01 application — the first of its kind for neonatal care coordination.
KEY FINDING - VOLLER 2025
86% 2-year survival vs 76% in historical controls — a 10-point improvement — and 0% lost to follow-up vs 13%.
KEY FINDING - DALLAS 2023
96% of parents felt empowered to advocate for their child's needs — and frequent, personalized support met families' evolving needs throughout the first year of life.
NIH R01 APPLICATION 2025
4 LHL partner hospitals. ~2,800 infants. Applied for the first rigorous multi-site study of neonatal care coordination ever conducted.
PEDIATRICS OPEN SCIENCE - 2025
Longitudinal Care Coordination Improves Survival and Eliminates Loss to Follow-Up
A peer-reviewed study of 95 NICU infants enrolled in the LHL-funded program at Rady Children's Hospital found significantly improved survival and outpatient follow-up compared to historical controls.
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The program also identified increasingly complex patients over time while reducing odds of prolonged hospitalization.
Voller S, Dizon MLV, Matoba N, Ryan AA, Mestan KK. Pediatrics Open Science. 2025;1(2):1–11. doi:10.1542/pedsos.2024-000228
ADVANCES IN NEONATAL CARE - 2023
Families and Providers Rate LHL Coordination as
Highly Effective
Coordinators set up the home, arrange medical supplies and equipment, connect families to community resources, and make sure parents feel prepared — not terrified — on the day they leave the hospital.
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Voller S, Dizon MLV, Matoba N, Ryan AA, Mestan KK. Pediatrics Open Science. 2025;1(2):1–11. doi:10.1542/pedsos.2024-000228
NIH R01 APPLIED - MULTI-SITE - IN PROGRESS
First Multi-Site Longitudinal Evaluation of Neonatal Care Coordination
Support doesn't stop at discharge. Coordinators attend appointments, arrange transportation, stack procedures to minimize anesthesia events, and remain a trusted resource through the first years of life.
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Vance AJ et al. Neonatal Care Coordination Multi-Site Longitudinal Cohort Study. NIH R01 Application, 2025. Sites: Lurie, C.S. Mott, Rady, Helen DeVos.
PEER REVIEWED RESEARCH
Independent science confirms what we see on the ground.
LHL's model has been validated in peer-reviewed journals and is now the subject of a multi-site NIH R01 application — the first of its kind for neonatal care coordination.
FAMILY EMPOWERMENT
The goal isn't just better outcomes.
It's empowered families.
Our coordinators don't just manage care — they build the skills and confidence families need to advocate for their children long after graduation.
96%
of parents enrolled in LHL felt comfortable advocating for their child's needs in the NICU — a population that typically arrives feeling overwhelmed and voiceless. 2
"Little Heroes League is everything to me. I have a go-to person who totally knows us and can anticipate our needs. They think of questions I didn't even know I had. They support me, advocate for me, and show me I can do this. We wouldn't be here without Little Heroes League."
— LHL Parent
"We can't change your medical situation... but what we can do is figure out ways to empower you and give you the skills to be successful."
— LHL CARE COORDINATOR
A FAMILY’S STORY
Charlotte’s Story
Behind every number is a medically complex baby who deserved — and received — a dedicated coordinator by their side.
Charlotte was born with multiple complex medical needs that required an extended NICU stay at Lurie Children's Hospital. Her family was overwhelmed — managing specialists, equipment, medications, and the emotional weight of not knowing what came next.
Their LHL care coordinator became their constant. She attended appointments, coordinated between providers, and helped Charlotte's parents find their footing — transforming them from terrified bystanders into confident advocates for their daughter.
Today, Charlotte is home and thriving.
HEALTHCARE SYSTEM RECOGNITION
When the evidence is strong enough,
systems take notice.
LHL's model has moved from philanthropically-funded innovation to healthcare system recognition — a trajectory that validates the model and amplifies the impact of every donor dollar.
WHY DONORS STILL MATTER
Donor support isn't a bridge to somewhere else.
It's the foundation that makes everything possible — in Michigan and every state where LHL operates. Medicaid partial reimbursement helps sustain what donors built. Every new hospital, every new state, and every family served starts with philanthropic investment. That will always be true.
THE RECOGNITION
Michigan Medicaid now partially reimburses this model.
Michigan Medicaid recognizes the value of this model and partially reimburses for it — allowing LHL to serve more families than philanthropy alone could reach. That recognition is a direct result of the evidence built through donor-funded programs at LHL partner hospitals.
NIH R01 APPLIED
LHL Is the Foundation for the First National Neonatal Care Coordination Research Network
All four hospitals included in the NIH R01 application — Lurie Children's, C.S. Mott, Rady Children's, and Helen DeVos — established their programs in direct partnership with Little Heroes League. LHL's Executive Director serves as parent advisor and cross-site connector. If funded, this study will generate the first rigorous, multi-site evidence base for neonatal care coordination — and LHL built the infrastructure that made it possible.
Every child served is a family that made it home.
And stayed there.
Be a BIG Hero to a Little Hero.
Your support funds a model that is peer-reviewed, backed by science, and changing lives from the earliest days.
SOURCES
Voller S, Dizon MLV, Matoba N, Ryan AA, Mestan KK. Impact of Longitudinal Care Coordination on Medically Complex Infant Outcomes in a Level IV Neonatal Intensive Care Unit. Pediatrics Open Science. 2025;1(2):1–11. doi:10.1542/pedsos.2024-000228
Dallas A, Ryan A, Mestan K, Helner K, Foster C. Family and Provider Experiences With Longitudinal Care Coordination for Infants With Medical Complexity. Advances in Neonatal Care. 2023;23(1):40–50. doi:10.1097/ANC.0000000000000998
Clark S, Cohn L. Impact of the Partners for Children Pilot Program on Medicaid Utilization and Expenditures. Susan B. Meister Child Health Evaluation and Research (CHEAR) Center, University of Michigan. June 2020. Delivered to Michigan Department of Health and Human Services.
Vance AJ et al. Neonatal Care Coordination Multi-Site Longitudinal Cohort Study. NIH R01 Application, 2025. Participating sites: Lurie Children's Hospital, C.S. Mott Children's Hospital, Rady Children's Hospital, Helen DeVos Children's Hospital.