10 Things to Know When Your Baby is Diagnosed with NEC

Written by Jennifer Canvasser, founder and executive director of the NEC Society, with support from the NEC Society team. This resource and others have been developed to be included in the NEC Society’s Empowerment/Bereavement packets for families recently affected by necrotizing enterocolitis (NEC), made possible through funds raised during NEC Awareness Month. Stay tuned for more details here. If you’d like to support this work, please visit NECsociety.kindful.com

In the hours leading up to my son’s NEC diagnosis, my spouse and I knew something was wrong. Despite learning and doing all we could to care for our son, Micah became critically ill, fast. We wish someone would have told us what to look out for before he developed necrotizing enterocolitis.

Parents need access to information to best advocate for their child. Yet, healthcare providers often hesitate because they don’t want to overwhelm or scare families with too much information. However, what is truly overwhelming and terrifying is not understanding or knowing what is happening to our child, nor how to contribute as the most important member of our child’s care team.

The NEC Society is committed to collaborating with healthcare providers and patient-families to facilitate NEC awareness and education. Here is what we wish someone had told us when our baby was diagnosed with NEC – created by families affected by NEC for families affected by NEC.

  1. This is not your fault. Babies develop NEC for many reasons, even when they have the most dedicated parents and healthcare providers. Nothing you did caused your baby to develop NEC.

  2. Learn and ask questions. NEC is a complicated disease, and the details of why or how NEC develops are still not fully understood by scientists. Still, you can learn more and consider questions about the risk factors, protective factors, and potential outcomes by speaking with your baby’s care team or visiting NECsociety.org.

  3. NEC is a life-altering disease. Many survivors experience long-term complications, such as short bowel syndrome for infants who required extensive surgery. NEC can even impact other organs like the brain, kidneys, and lungs. Some babies tragically die from NEC. The NEC community is working to build more resources and support for families affected by this devastating disease.

  4. You are the most important member of your baby’s care team. Ask to participate during medical rounds for your baby. Your questions, thoughts, and concerns are valid. Speak up. You are your baby’s expert, and you know your baby best.

  5. Continue to advocate for human milk. Human milk does not eliminate the risks of NEC, but human milk is one of the most effective ways to help reduce the risks of NEC and nourish your baby. Pasteurized donor milk should be available to infants at risk of NEC when their mother’s own milk is not readily available. You can learn more at HMBANA.org.

  6. Build a primary team of nurses. When an established team of nurses provides care to your baby and family, it helps to foster trust, rapport, and open communication. This continuity of care can also help lead to better health outcomes for your baby.

  7. Become an advocate. It can be hard to speak up, especially when things feel overwhelming and scary. One way to overcome these feelings is by advocating for your baby, your family, and yourself. Ask your baby’s care team to provide access to more information so you can become more informed and empowered.  

  8. Prioritize yourself. Your baby needs you to be as well as possible. It helps to surround yourself with people who are uplifting and who can help take care of you. By focusing on your needs, you’ll feel more ready to participate as an active member of your baby’s care team.

  9. Connect with your baby. Even if your baby is unwell, you can still bond and nurture your little one by reading storybooks, singing lullabies, and massaging their skin. Books, music, and touch can benefit both you and your baby.

  10. Capture this moment. For better or worse, you’ll never have this time back. Take photos and videos, even if your baby is critically ill. Use a stamp pad to capture your baby’s handprints and footprints. Keep a journal where you can write down details about this experience, so you have them to reflect on years from now.

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