Stories of Necrotizing Enterocolitis (NEC)

Necrotizing Enterocolitis is common among ill or premature infants that occurs when bacteria invades the intestine. This bacteria causes an infection and inflammation which ultimately destroys the bowel or intestine. “NEC affects one in 2,000 to 4,000 births” which ends up being “between 1 and 5% of neonatal intensive care unit admissions” [1].

Lucelena and Cecilia
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            Rebecca Casillas’s twin girls, Lucelena and Cecilia, were born at 28 weeks and 5 days. Lucy at 2lbs 8ozs and Ceci at 2lbs 2ozs. The girls had varying degrees of respiratory therapy and were making good progress on temperature stabilization, weight gain and oxygen levels. About 6 weeks into their NICU stay, both girls started losing ground and backtracking on many of the gains they had made. They moved back into incubators from an open bed, off of room air back to O2 all within 2-3 days of each other. They both were diagnosed with medical necrotizing enterocolitis (NEC) and began a 7-10 day treatment of antibiotics.
            It was so hard for Rebecca and her family to see the girls go back to the IV fluids (total parenteral nutrition) after they were getting the hang of bottle and breast feeding. It was equally hard for them to know the taste of milk and feeling of a full belly and then everything be taken away. There were many scares with x-rays of their bowels that got worse before they got better and once they were cleared for feedings again, we had to start slowly and build everything back up from what seemed like Day 1. But as most things go in the NICU, we took it one day at a time and miraculously, on their original due date, the girls were able to come home with very few issues.
            They are now both thriving at 16mo olds and enjoying each day as they learn and grow, progressively acting more and more like their actual age vs the age adjusted for their prematurity. The Casillas family is so thankful to the medical team at Magee Women's Hospital that caught this issue before it became surgical. It is truly amazing how strong the fight is in these children and how inspiring they can be. Rebecca hopes that their story gives those going through a similar situation comfort. They are sending good vibes out to all those still fighting. 

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Easton and Isabella
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            Easton and Isabella were born on April 2, 2016 at 23 weeks 1 day. They each weighed 1lb 7oz and 11 inches in length. Isabella was Rachael Erickson’s lung girl, she had a patent ductus arteriosus (pda) that closed, a chest tube inserted within the first 2 weeks, pneumonia and a run in with NEC. It took 3 rounds of steroids at different times to get Isabella on low flow O2. They thought she would end up with a tracheotomy but fortunately her symptoms did not worsen. They eventually found that she was aspirating with her feedings. After this discovery was made the hospital team got her bottling on thickened feedings and she did great.
            Easton had a grade 1 Bleed which resolved on its own, PDA which resolved on its own, Avastin injections for ROP, Ecoli from the breathing tube, and got NEC twice. Easton got NEC within the first 10 days but did not develop any perforations. He was started on feedings again however the NEC developed again. He had surgery at 2 months old and received 2 stomas. After surgery he was considered “failure to thrive” as he wasn't gaining weight and was not absorbing his feedings. His intestine protruded greatly which caused him to have another surgery 7 weeks later to reconnect. Surgery was a success and very little intestine had to be removed. Easton is now on feedings but is struggling with his breathing.
            The hospital staff didn't think Easton would make it after his second run in with NEC. Now all they say is he is a miracle. Isabella came home at 9lbs at 137 days old, she is on low flow O2 but doing great.

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[1] http://www.chla.org/necrotizing-enterocolitis