Necrotizing enterocolitis: a devastating digestive disease of premature babies

I do not see celiac disease in my practice as a neonatologist as most of my patients are born prematurely, weigh less than 5 pounds at birth, and have never eaten wheat.  That being said, I have taken care of several babies with an intestinal condition that is much worse than celiac disease. It is called necrotizing enterocolitis (or NEC) and approximately 5-10% of the smallest premature infants develop it after birth. The incidence in the neonatal population overall is 1-2%, similar the rates of celiac disease in the adult population.

Babies with NEC develop inflammation in the lining of their intestines which can lead to injury and death of segments of the small and large intestines. In the worst cases of NEC, perforations (holes) develop in the intestines and portions of the intestine have to be surgically removed. Clinical signs of NEC include abdominal distension (babies’ bellies often become large and hard like a rock), bloody stools, delayed digestion, respiratory distress, and shock.  Once NEC develops, it can progress rapidly, and 25 to 30% of babies who develop NEC die. A healthy premature infant can develop NEC and be dead within 8 to 12 hours.

The cause of NEC is unknown.  It usually develops after the first week of life and, in most cases, after a baby starts to receive feedings. The risk of NEC is much higher in babies who receive formula than those who receive pumped breast milk (or donor breast milk) but we do see cases of NEC in babies who have received only breast milk.  Although we are able to treat NEC medically, with bowel rest and antibiotics, we are not quite sure which bacteria are the culprits. Similar to celiac disease, emerging research is showing that NEC may be associated with an overgrowth and colonization of babies’ guts with “bad” bacteria, and probiotics are being researched as a possible way to prevent NEC in preemies.

Although there is not any known association between NEC and celiac disease, I think it’s important for us to be aware that there are other digestive diseases out there for which there is much less known than celiac disease. Although we cannot prevent celiac disease from developing, at least not yet, we are able to treat it with the gluten-free diet.  Despite our best efforts to prevent NEC (through exclusive breast milk diets), it is still occurring at alarming rates, and the treatments do not always work. NEC has many parallels with food protein-induced enterocolitis, a disease of infants and children that I wrote a post about last spring.

The NEC Society has recently been founded by the mother of a premature baby who died from NEC-associated complications in 2012.  The missions of the NEC Society include to increase awareness of NEC, empower families affected by NEC, and to, ultimately, prevent it.  Please check out their website and share it with others who may be interested and/or helped by the information on it. One of my favorite posts from their site is called “Pointers for Parents of Preemies” from February 2014.

Lastly, out of curiosity, have any moms out there with celiac disease or non-celiac gluten sensitivity had an infant develop NEC? If so, would you be willing to share your story? Thank you!


17 thoughts on “Necrotizing enterocolitis: a devastating digestive disease of premature babies

  1. Jenn

    Thank you for sharing your insight and commitment to premature infants! I really look forward to working together.

    1. Jess Post author

      Thanks Jenn for reading and sharing. You, Micah, and all of my past patients with NEC inspired my post. I look forward to working together too.

  2. Leslie

    NEC is a devastating disease. I appreciate you sharing information regarding it. It is so surprising that a disease this prevalent and this lethal is not well known. I lost my precious grandson to NEC. I had never heard of it. I am pleased to hear that the NEC Society is going to change that. Godspeed to this organization in their endeavor to bring awareness and push ultimately for prevention of NEC.

    1. Jess Post author

      Hi Leslie,
      My heart breaks for the loss of your grandson. Most families who are affected have never heard of it either. I hope that we can find a way to prevent it. There’s some good research going on, and it seems that probiotics may make a big difference, but it is going to take time to implement all of the necessary changes in NICUs.

  3. Pingback: Necrotizing enterocolitis: a devastating digestive disease of premature babies | NECsociety

  4. RaeMarie Timm

    Reading about the premature babies with NEC develop inflammation in the lining of their intestines which can lead to injury and death of segments of the small and large intestines. In the worst cases of NEC, perforations (holes) develop in the intestines and portions of the intestine have to be surgically removed.
    What struck me was the similarities between symptoms of NEC and how the active ingredient in Roundup, Glysophate punches holes in invading pests intestines. Wondering if your studies have taken into account when this toxin was introduced into our food supply if their are correlations

    1. Jess Post author

      Hi RaeMarie,
      Your question interests me because I had exactly the same thought go through my mind the first time that I read about the effects of Roundup as well. However, NEC has been around for a long time, and predates the introduction of Roundup into the US agricultural system.
      That being said, there is a similar condition in premature babies that is similar to NEC, but not quite as deadly, that has been increasing in premature babies as well. It is called SIP, short for spontaneous intestinal perforation. These babies develop holes in their intestines for no good reason, and its definitely being recognized in the preterm population more and more…

  5. Melanie

    My son was born at full term and diagnosed with SVT (a heart arrhythmia) and NEC. He didn’t require surgery and after 17 days he barely gained enough weight to come home. When he was 5 weeks old he ended up in the hospital after I gave him his heart medicine with a milk based formula. Although I knew he had a severe milk and soy intolerance at this point, it was a whole year before I had a doctor diagnose him with FPIES. I am a type 1 diabetic with negative celiac disease tests but am most definitely gluten intolerant. A year after my son’s birth my own health declined significantly and for the first time I started hearing about celiac disease and gluten intolerance. My son is also gluten intolerant and with negative celiac serology due to low immunoglobulins. He has had a phenomenal response to the gluten free diet. The first month gluten free he gained 2 pounds and started walking and talking better, all as a 14 month old. Despite spending the first year of his life at the 12th percentile for weight he has steadily climbed and is now at the 60th percentile! After such a difficult start to his life it is hilarious when total strangers compliment him on how big and strong and healthy he is. They have no idea how far he has come. We are so thankful. So currently he is gluten, dairy, soy and artificial colors free. He is 2 1/2 now. I enjoyed your article about FPIES and hope my son does outgrow it by 3.

    I have been following your blog for a few months and enjoy your perspective as a doctor. We seem to have some of the same neurological symptoms with gluten exposure and also the sulfite sensitivity. I don’t normally leave comments, but as a mom who has seen her baby suffering in the NICU I really hope this can help someone out there. I too am curious about how/if gluten intolerance fits in to all this.

    1. Jess Post author

      Hi Melanie,
      Thank you so much for introducing yourself and for sharing your story (and your son’s).
      We are lucky that we have been able to put the puzzle pieces of our lives (and our kids’) together and figure out what is happening…my heart breaks for those who have sick babies and toddlers and do not know that their children should be avoiding certain foods. I also cringe when I think about how many other adults there are with chronic medical conditions that would improve if they avoided gluten, sulfites, or whatever else their bodies are reacting too.
      I am positive that there is a link between maternal gluten intolerance and infants being born allergic to milk proteins but there’s no research to back up my hypothesis. I would like to someday be able to study the utility of infants’ food intolerances/milk protein allergies/enterocolitis as a way to screen for gluten issues in mothers (but there are a lot of barriers to me being able to do this anytime soon).

  6. Natalie

    My Son was born full term at 39 weeks he was diagnosed with NEC at 6 days old. 2 days prior he would cry a lot and the day I took him in was because I found fresh blood in his poo. He was on anti biotics for 10 days and he seemed fine after we went home but his intestine was obstructed something not even doctors noticed but I just knew something wasn’t right so I insisted. I had no idea what NEC was I was. I was a new mom with no health problems my son was being fed formula and breast milk. I honestly have no idea what went wrong. I do believe it was because during labor my placenta ripped and they hadn’t noticed until after my son was delivered .

    1. Jess Post author

      Hi Natalie,
      I am so sorry to hear that this happened to your son and I hope that he is recovered and doing better. Thank you for sharing your story about having a full term baby with NEC. Out of curiosity, does he have any food intolerances now?

  7. Natalie

    Jess he did have trouble digesting solids and whole milk but now he is in perfect health he eats everything and so far no more problems we weren’t able to starts solid food until he was about 1 and half. He is 3 now a little smaller than the rest but he is doing so good.

    1. Michelle asmussen

      Hi Jess
      I am from London uk
      I saw this post whilst researching my son’s allergies
      He was born full term and went into septic shock and was in intensive care. On his letter to gp it mentioned NEC although we weren’t informed of this. Since 3 weeks old had terrible reaction to Formula (I too couldn’t produce enough milk and have had stomach problems for 25 yrs i was a prem baby am now on wheat gluten dairy free diet query lactose intolerance celiac after my son’s dietician agreed to see me due to Dr’s not doing anything for so long)
      My son is 2 and a half has milk protein allergy soya delayed reactions and possibly oats and is on coconut milk he also has atopic asthma and eczema he is eating wheat and am thinking about cutting it out again due to the atopic asthma development. It is very hard for parents to try and piece bits of the puzzle together and sites like yours are amazing

      1. Jess Post author

        Hi Michelle,
        Thank you for writing and sharing your experience. My heart breaks for all that your son went through. I hate NEC!
        Since writing this post last year I’ve been able to read and learn more about how bacterial imbalance can play a role in food allergies and intolerances, etc. One of my biggest worries as a neonatologist is the extended antibiotic courses that we prescribe for some of our patients (and the effect on their gut bacteria). There is emerging research that probiotics may help with all of this, but it is not yet the standard of care.
        I wish you well. I wish that I could dedicate more time to this topic.

  8. Adria

    Hello, I am the mother of a baby who had NEC when she was born. My baby is now 25yrs old and is having serious complications. She can’t seem to keep anything down. And has had serious pain to the point that she went to the ER. They ran blood tests and other checka and they didn’t find anything alarming. I can’t seem to find anything on line about adults who have been living with the condition. All her life shes always had issues with her bowel movements being very loose but lately they’ve been watery. She made an appointment to see a gastroenterologist next week but in the mean time has to deal with pain and either starving because she doesn’t know what to eat or eating and having it cause her more pain and watery stool. Is there anything specific ahe should be eating or avoiding? Are there any forums, articles or websites that are geared specifically for adults that were diagnosed with NEC at birth? I’m so concerned for her, and back when she was born I don’t recall them telling me anything about the issues she moght have as she gtee older. Any information is appreciated.

  9. Ashley

    My daughter was born at 25 weeks and 5 days gestation, 1 pound 12 ounces. Exactly a week after she was born, she was rushed to a higher level NICU in the state to undergo surgery for perforated bowel as a result of NEC. They gave her an illeostomy which they later took down and reconnected, but she ended up losing a total of 6 inches of small intestine.

    She’s now almost 3 years old, spunky as can be and incredibly smart. She knows all her letters, upper and lower case, and can recognize numbers 0-9. She’s just tiny, in the 1% for weight, 11% for height for her age.

    She’s on a regimen of Pediasure Peptide while trying to encourage her to eat regular foods in between. That said, I’m beginning to suspect some food intolerance but I’m not sure how to go about pinning them down. I think lactose is a possibility, which is unfortunate because she loves cheese and milk and it has been one of the main ways we get her to consume calories.

    Anyways, thank you for the information. I hadn’t considered gluten before. We’ll look into that next.

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