Kevin’s Story

June 24th, 2011 by Patti

This is a wonderful website for sharing information. I came on here to see if there were any stories or resources for NEC information on ongoing problems but found wonderful stories from amazing people. I had twins in 1993 that were born at 32 weeks, Kevin and Kyle. Days after being born we were told Kevin had NEC and was being transferred to another hospital across town. I knew nothing about NEC, only that the doctors told us not to expect Kevin to make it through the night. My mother had come down from Idaho where she had very recently married the love of her life, John.

After spending hours scared to death, my mother went to my house to change clothes but on the road trip there she called to tell me her new husband John had just had a heart attack and died. It was not the best day in our lives to say the least.

Kevin thankfully got better and was able to come home about a month later. He and Kyle are now 17 years old. They are the smartest, loving, happiest boys you could ever met. I am worried about Kevin lately though – he is having bad intestinal problems with constipation issues. Our gastro doctors are just telling us to put more fiber in his diet but I think this is more.

When Kevin first started getting better back when he had NEC the doctors told us it would be possible he could have scar tissue when he gets older and this may cause issues. The more I push the issue with the doctors the more they ignore it and blow it off as an infant disorder that has nothing to do with him at 17.

Any info with ongoing issues from NEC would be helpful. I am so sorry for the lose of babies on this site. It was a horrible experience 17 years ago and I could not imagine life without Kevin today.

One response to “Kevin’s Story”

  1. Miranda says:

    Hi Patti, I hope that you take your suspicions to another doctor. I would find the best one with the most experience in the follow up of NEC babies and get that opinion. I have also read that NEC could affect the baby’s life into adulthood.

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