New program offers support for families of newborns with complex medical conditions

August 4, 2021  //  FOUND IN: News,
Two hands cup a baby lying in a NICU bed.

Having a new baby can be overwhelming — especially having a new baby born with complex medical conditions.

C.S. Mott Children’s Hospital recently launched a new family support program, called Little Victors League, with the goal of helping infants who are born with or develop complex medical conditions thrive and live their best lives.

Little Victors League provides parents with dedicated care coordination during a baby’s hospital stay, as well as after discharge, in an effort to improve outcomes.

“We act as an advocate for each baby,” said Meera Meerkov, M.D., a neonatologist and medical co-director of Little Victors League. “The Little Victors League provides an integrated team approach, while keeping in mind each family’s unique situation.”

Tricia Keefer, M.D., of pediatric palliative care and medical co-director of Little Victors League, echoed that sentiment: “Our team members are very skilled at identifying resources both in the hospital and in the community for when the family returns home.”

Coordination of care

A Little Victors team member helps coordinate communication between multiple pediatric specialists, streamlines procedures and appointments, assists with decision-making and provides emotional support to the family.

Some of the care and resources the Little Victors League may provide include:

During a hospital stay

  • Serve as a liaison for families between the NICU team and other pediatric specialists, such as pediatric cardiology, pediatric neurology, etc.
  • Regularly communicate with the family, care teams and physicians face-to-face, or via video and phone formats.
  • Assist with transitions inside the hospital as well as from the hospital to the home environment.
  • Provide expert care coordination, education, consultation and advocacy for the baby and family.

At home

  • Touch base via video calls and/or home visits, addressing current concerns and providing necessary care coordination.
  • Accompany patients’ families to their first visit with primary care providers.
  • Accompany patients’ families to clinic specialty visits, if appropriate.
  • Provide education and community resources, such as Early On services for children with special needs and similar support programs.
  • Assist with insurance coordination, such as enrolling in Children’s Special Health Care Services and Medicaid.
  • Assist with medical equipment needs.
  • Provide education on use of medical equipment, medication administration and symptom management.

Learn more about the program

The program launched in July. Families are recommended for enrollment to the Little Victors League by the NICU team or other Mott specialists and complex care teams.

“We want our colleagues in Mott to know about this program and what we can offer to families who need assistance,” said Brittany Shupe-Sawyer, LMSW, outpatient clinical social worker for Little Victors League.  

Jessica Pelletier, M.S.N., RNC-NIC, C.N.L., inpatient complex care navigator for Little Victors League noted, “As we can only enroll 30 babies in our first year of the program, we do have specific inclusion enrollment criteria, such as evidence of multisystem organ involvement and social determinants of health.”

Care teams who would like to learn more about the program may email Little-Victors-League@med.umich.edu.

Funding

Little Victors League was inspired and championed by the Little Heroes League program at Lurie Children’s Hospital in Chicago, which offers highly organized care from prenatal diagnosis through hospital stays and a return to home. Additionally, Little Victors League draws on the successful experience of the Partners for Children program, a community-based pediatric palliative care service for children at C.S. Mott Children’s Hospital with complex medical care needs and conditions.

Currently, Little Victors League is mainly funded by donations.  

“As we work toward statewide sustainability of programs that provide such a critically important extra layer of support to children with chronic complex needs, we hope to enroll even more families in our program in future years to come,” said Natalia Simon, M.B.A., Partners for Children program manager. “Until then, we will happily continue accepting donations and funding to do so.”

Those interested in donating to Little Victors League can email Little-Victors-League@med.umich.edu. Additionally, an upcoming golf outing, the Big Victor Charity Golf Outing on Aug. 16, will raise funds for the program.

Learn more at the outing’s website.

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