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Resources for Families in Your NICU

The NEC Society offers educational resources that provide comprehensible, evidence-based information about NEC, and empowers parents to advocate for their child.

Micah

Diagnosed Resource Box

Request Family Resource Boxes in your NICU

The NEC Society offers resource boxes for families diagnosed with NEC or who have tragically lost their child to the disease.

The Recently Diagnosed Family Resource Box empowers families to learn more about NEC, advocate for their child, and connect with our community.

The Bereaved Family Resource Box was created for families who have tragically lost their child to NEC. Developed by bereaved families in the NEC Society community, this box provides a sense of comfort, peace, and connection.

Learn how to get Family Resource Boxes in your unit

Glossary of Terms

We developed a NEC glossary to simplifies complex medical terms related to NEC to empower patient-families to better understand the language and care their baby may encounter in the NICU.

Explore the Glossary
Jenn and Micah
Jenn and Micah

Resources on NEC for NICU Families

Too often, families first learn about NEC when their baby is being diagnosed or even being rushed into surgery. These resources are designed to guide and inform families at risk of NEC or who have experienced a NEC diagnosis.

These resources were created in partnership with the Children’s Hospitals Neonatal Consortium (CHNC) NEC Focus Group.

Using the resources created with CHNC

Every center should consider its unique community and patient needs to consistently use these resources for families at risk of or affected by NEC.

The NEC Society encourages the following:

  • Reducing the Risk of NEC: given to all families admitted to the NICU. This document provides information on what to look out for and ways to reduce the risk of NEC. Download here.
  • After a NEC Diagnosis: given to families at the time of a NEC diagnosis to empower them with information so they can serve as an informed member of their child’s care team and access more resources from the NEC Society. Download here.
  • NEC and Surgery: given to families when surgery is needed after a NEC diagnosis. This document provides information on what to expect before, during, and after surgery. Download here.
  • What to Know at Discharge: given to families at discharge from the NICU after a NEC diagnosis. This document empowers families with information about potential long-term considerations and how to connect with the NEC community. Download here.
  • Navigating Grief: given to families whose baby has tragically passed away from NEC. This document provides support and resources on navigating the lifelong grief of child loss. Download here.

 

 

These documents are best printed in color. For questions or requests for translated materials, please contact ErinPryor@NECsociety.org