Necrotizing Enterocolitis killed my baby and claims the life of another baby every day. We’re coming together to prevent this common, deadly neonatal disease.

The first time I heard, “Necrotizing Enterocolitis” (NEC), my son Micah was critically ill. I tried desperately to keep myself together and listen as his healthcare team explained this deadly disease. But, all I could focus on was Micah. In a matter of hours, he went from looking like a beautiful five-pound baby, to a critically ill infant with cords, wires, and tubes on each of his extremities.

before NEC

before NEC

Late that night when I was alone, I screamed and sobbed. I was terrified of losing Micah and desperately wanted to protect him. Little did I know this was just the start to a very long fight that my son would ultimately lose.

renal failure resulting from NEC

renal failure resulting from NEC

NEC is a life-threatening neonatal condition that causes the death of intestinal tissue. During Micah’s downward spiral, I searched for information and resources related to NEC, but there was surprisingly little available. There was no NEC association. There was no NEC council. There was no organization committed to reducing the incidence of NEC. NEC is one of the top 10 leading causes of infant death in the United States. The babies who do survive NEC often struggle for years to come. NEC affects thousands of babies every year.

NEC stole my baby’s life. The loss of a child is tragic and devastating. There is no healing. It is a lifelong loss. A piece of yourself dies along with your child. It took me a year to learn how to live without Micah in my arms. During this time, I heard story after story of other babies struggling with NEC. Unfortunately, many of them also lost their battle. Babies lose their life to NEC. Every. Single. Day.


With all of the research and medical advancements, why haven’t the NEC rates changed in decades? Why haven’t we figured out how to prevent this devastating disease? Why is there a gap between NEC literature and NICU practices? Why isn’t anyone talking about this common, costly, deadly neonatal disease?

The NEC Society is tired of the status quo. We are bringing together internationally recognized NEC researchers and clinicians. We are empowering NEC activists to speak up and take a stand. We are providing families of premature infants with accessible and evidence-based resources. We are challenging hospitals, clinicians, insurance companies and others to help us protect premature infants from NEC. Our babies are counting on us.

7 Comments on “Necrotizing Enterocolitis killed my baby and claims the life of another baby every day. We’re coming together to prevent this common, deadly neonatal disease.

  1. My son is a NEC survivor. He was born extremely premature 25 weeks gestation, 1 pound 11 ounces. 5 month NICU stay.

  2. Thank you sharing your story of your son Micah. He is beautiful. I wish I was able to share a story of survival but rather I share the story of my son Elijah who passed away to NEC on July 24th 2013. I, like yourself searched for information, some milestone closer to discovering a cure for this disease. I often research online for any information, at the very least aid with my thoughts of the unknown reason he is not laying next to me today. It will never make things to where I have Elijah but I feel this sense of helplessness when the doctor so matter of fact shared “he has NEC and they are not be able to operate” sitting there holding your baby and counting moments to cherish his last minutes are the moments I will never forget. I asked the same questions you did so many times, why ?
    We went home to a house that if imagined him playing in, a house ready for the sounds of his cries, the smell of his baby lotion. Rather, I try to understand why this monster disease came to take it all away.
    We planted a garden for Elijah and is try to be strong each day knowing (believing) our son is watching over us.
    There is no bringing him back but I wanted to let you know I was truly touched by you sharing your son and the experience you shared. My heart hurts to read another child taken by this disease. I am interested to hear more about NEC or any progress that has been made to making sure prevention or alternative steps are taken to successful premature growth so these children can go home to a family that so very much wanted them in the families arms.

  3. Twenty five years ago my baby was born prematurely. She looked well after one month in the hospital and was about to go home, then she developed NEC. She survived. But it was the most devastating experience of my life. I have a beautiful daughter, thankfully. The work that is being done to address this devastating disease is so necessary. I hope we can all help in some way. Catherine

  4. My Son is a NEC survivor!! He was a healthy FULL TERM baby…. at 4 days old he got very sick very fast!! I thank the Lord everyday for our outcome of this terrible disease!! God bless you and your family.

  5. Four years ago this month, I delivered twin boys, Aiden and Alex at 31 weeks. Alex developed NEC at 5 days old and it took his life in less than 24 hours and he died the next day after emergency bowel surgery. Aiden went on to spend almost 7 weeks in the NICU. I too searched and searched for answers and information on NEC. I received some cash donations from family and friends after Alex’s funeral and I really wanted that money to go to NEC research. I made several phone calls to universities that were doing studies. Those who did call me back were not very helpful and said thier research was grant funded. We took this money and donated it to the local childrens hospital that saved Aiden’s life, and did everything they could to save my Alex. After almost 2 years of fundraising and grant appeals, Alex’s Playground was erected in August 2012. I found some peace in my heart, but I wish more could be done so that no other parent has to sufffer.

  6. I lost my 29 week old baby to Nec tonight. He was born at 27 weeks an even 2lbs. He was doing so well, until this deadly infection took over. I’m at a lost for words and thank you ladies for sharing.

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