Families affected by necrotizing enterocolits (NEC) often experience feelings of isolation, along with a lack of resources and information about the disease. Many of us at the NEC Society have been impacted by NEC, and we have created Family Resource Packets to provide the information we wish we would have had at the time. These packets contain up-to-date information about NEC and resources to empower, educate, and support families.
At limited neonatal intensive care units (NICUs) in the United States, a family whose baby was recently diagnosed with NEC or passes away from NEC can request one of our Family Resource Packets. The packet will be sent to their home, free of charge. Materials are available in both English and Spanish. The packets are only available through their hospital and not available for direct purchase. This program is made possible through the generous support of the NEC Society’s community. You can donate here. Thank you!
Newly Diagnosed Family Resource Packet
When families receive a NEC diagnosis, it can be an isolating and confusing time. Our resource packet lets families know that they are not alone and provides them with clear and accurate information about necrotizing enterocolitis, and about what to expect.
Materials in the packet 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.
Bereaved Family Resource Packet
Families experiencing the devastation of losing a child to NEC often feel alone in their grief. Our Bereaved Family Resource Packet was developed by bereaved families, and provides the information we wish we would have had when we lost our child.
The packet supports families in the knowledge that they will always be their baby’s parent, and that their precious child will always be part of their life. Tree of Courage note cards and plantable seed paper, to plant in memory of their child, are also included.
“When your child has been diagnosed with NEC, it is a soul crushing experience. With so many emotions and questions running through your head and heart, it’s difficult to know what to ask, what to do, or where to start your advocacy. These boxes are helpful because they give families actionable steps to help them feel empowered during a time when they may feel powerless. These boxes provide a warm and comforting touch during a difficult time from families that were directly impacted by NEC.”
– Amena Mebane, whose daughter was affected by NEC
“When your child is given this diagnosis, having the opportunity to receive a box of information directly from the group of practitioners and parents who know it best and are invested in your outcome would be extremely helpful. I have learned as a bereaved parent that any acknowledgment of my precious baby is such a gift. And to receive that from the group who knows and understands this journey best would be incredibly meaningful.”
– Julie Cavellini, whose son was affected by NEC