Necrotizing Enterocolitis Study
Posted by kim on February 5, 2009
If you read our NICU story, you know that both of my twin daughters were diagnosed with Necrotizing Enterocolitis (NEC) where the bowel become infected and dies. Macy had seventeen inches of her small intestines removed and a temporary colostomy. Mallory only had a few centimeters removed and was fortunate not to have to have a stoma put in. Back then (15 years ago), the mortality rate for infants infected with NEC was 77%. Thankfully my girls beat the odds.
I subscribed to TWINS Magazine when the twins were still babies, and met many new friends in similiar situations through their PenPal section. This is before we had the internet – imagine if I had access to all of the information online back then! I corresponded with several other moms of preemies, and I was especially interested in hearing from those who had experienced NEC firsthand.
I found some interesting trends among those that wrote to me, so when I started a website dedicated to my “Million Dollar Miracle Babies”, I made an online survey for others to participate so I could see if I got the same conclusions. Here are some statistics thus far…
Obviously my daughters skewed the stats being female. And usually in twins, only one (and usually the first born) has NEC. Whereas both of my daughters suffered from it, but Macy (Twin B) was worse off. My girls were formula fed and given meds for PDA, though.
If you or someone you know have had experiences with this deadly disease, I would love to hear your results by completing our NEC Survey. All of your answers will remain confidential.
I would also love to hear your NICU story! Share your story to be posted here on PreemieTwins.com!
Shannon said,
We had a NEC scare with my 31 weeker. Thankfully, she didn’t have it…I read everything I could find on the subject during our first NICU stay in 2006 with my 26 weeker.
Danielle said,
My son was born at 39 weeks. He was diagnosed with NEC when he was 5 days old. He was started on antibiotics that same day and went into surgery the day after they found it (which was the day before my birthday). They told us that they weren’t sure how bad it was until they opened him up. I prayed that everything was going to be fine and that was all I wanted for my birthday. 2.5 hours later the doctor came out and told us that he was as good as it gets. He had a colostomy for a month and half. He went back into surgery later to get reconnected and everything was perfect. It was probably one of the scariest times of my life. I’m so thankful that everything went well!
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