Resources for Families Recently Diagnosed
Learning about NEC can help you advocate for your baby and make informed decisions. There is not a single cause of this disease, and it is not your fault if your baby develops NEC.
Request a Free Newly Diagnosed Family Resource Box
When families receive a NEC diagnosis, it can be an isolating and confusing time. Our resource box lets families know that they are not alone and provides them with clear and accurate information about necrotizing enterocolitis and what to expect.
Materials in the box empower families in their role as the most important members of their baby’s care team. Our signature Tree of Courage note cards and an inspirational book to read with their baby are also included.
We are dedicated to supporting families impacted by NEC worldwide. Due to the high cost of international shipping, we are currently able to provide physical materials only within the United States. We encourage all families to explore our comprehensive online resources.
Understanding NEC
Necrotizing enterocolitis (NEC) is an intestinal disease that primarily affects premature and medically fragile infants. NEC causes an inflammatory process that can lead to intestinal tissue damage. Learn more about this disease and the common questions.
Glossary of Terms
The NEC Society created a NEC glossary to break down complex medical terms related to NEC to empower patient-families to better understand the language and care their baby may encounter in the NICU.
Long-Term Outcomes of NEC
Many babies recover from NEC without complications. Some babies recover but may experience long-term health and developmental issues. The NEC community is working to build more resources for families affected by this disease.
NEC Society FaceBook Group
A private FaceBook group to help parents connect with others who have been personally affected by necrotizing enterocolitis. This group is exclusively for patient-families and a safe space for those impacted by NEC. To be admitted, you must share how you are personally connected to this disease.
Resources for families impacted by NEC
The NEC Society, in partnership with the Children’s Hospitals Neonatal Consortium (CHNC) NEC Focus Group, is proud to share new resources on necrotizing enterocolitis (NEC) for families impacted by NEC.
Additional Resources
- Hand to Hold is a nonprofit that provides personalized support before, during, and after a NICU stay to help ensure all NICU families thrive
- March of Dimes has a NICU Family Support program that provides education and information to NICU families
- Download 10 things to know when your baby is diagnosed with NEC
- The Global Foundation for the Care of Newborn Infants (GFCNI) is a global organization and network that unites patients, families, healthcare professionals, medical staff, and scientists from different disciplines, fields, and countries.
