Undergoing serious medical treatment in the first year of
life is difficult enough for critically ill babies.

They deserve the highest level of coordinated care to reduce their suffering.  


Coordinated care meets babies born with medically complexity special needs medically complex babies’ special needs by providing highly organized care in the hospital, at home and through community providers that result in the safest and most effective treatment for these children and maximizes their time at home.

Undergoing serious medical treatment in the first years of life is difficult enough for critically ill babies. They deserve the highest level of coordinated care to reduce their suffering and give them the best chance at life.


how it works


Nurses and social workers are dedicated exclusively to these babies and serve as the point person to organize care for each of these children and to help the needs of their families.


Acting as an advocate for each baby, they coordinate multiple pediatric specialists, coordinate procedures and anticipate what each child needs. They are also adept at navigating the health care system, which can be a daunting task for parents of children with complex health needs.


They are the central contact and source of comfort for these families, whom they will also support by identifying social service and health care agencies closer to home, and conducting home visits.

Why Care Coordination is critical 

The early months in life are when pain reduction can hold tremendous advantages for a baby’s rapidly growing brain, and when proper interventions such as restoring hearing or vision can impact social, emotional and language development that lasts for a lifetime. Little Heroes League and Lurie Children’s are committed to capturing these opportunities by providing highly coordinated care for these babies.

Many well-intentioned parents are unable to coordinate this high-level of care on their own. They may feel inundated as they try to cope emotionally with their baby’s long-term illness. Further complicating the family’s situation, a trip anywhere outside the home is difficult because most of these babies depend on assistive devices such as ventilators, monitors or feeding tubes. Often, the result from these difficult situations is inadequate follow-up care that leads to multiple trips back to the Emergency Department and hospital readmissions because their baby’s health has not been well managed.

These patients are usually seen by many medical specialists to treat and monitor disorders in different organ systems. To survive, they must undergo multiple surgeries, needle sticks, anesthesia and other procedures. For babies who have left the hospital, eliminating the need for another doctor visit is frequently the best choice if care can be provided at home or if care can be accomplished with fewer trips to the hospital.

Care coordination impacts babies

  • Reduces unnecessary & duplicative procedures

  • Reduces length of hospital stays

  • Reduces number of hospital admissions

  • Reduces Emergency Department visits

  • Reduces pain and enables more time at home


Care coordination impacts families

  • Reduces the emotional and physical stress

  • Reduces healthcare expenses

  • Fewer misunderstandings about medical care

  • Fewer missed days from work

  • Reduce travel to hospital