he was post to die...

[bslocum26]

has anyone survived NEC??

[tayandky]

I had NEC when I was just a couple days old, I am now 26. I had all my large intestine removed and I have 84 cm of my small intestine, I know you guys are talking about babies but I was looking for anyone older that has had it. I can not believe I am still here I went through so much when I was a baby and I am here today. It's hard to gain weight and be able to absorb my vitamins and my food. i take a couple of vitamins and have monthly b12 shots. I was just wondering if there is anyone else like me I don't know many people that have had gone through this, it would be great to find someone.

-Athena

[Kama34]

My son was diagnosed with NEC 2 weeks after he was born (at 31 weeks).  They treated him and after total of 6 weeks he was discharged.  After 2 weeks of being at home we noticed blood in his stool.  We took him to the hospital and he was diagnosed with NEC again.  He was on antibiotics for about 1.5 weeks.  The doctors said he does not have to have a surgery at this time.  They did a barium study and it came back ok.  I'm still worried because he's not passing any stool yet and they started him on breast milk 2 days ago.  What are the chances that he may get it again?  At what point will his chances of getting it again are much lower?  

[mumnic]

Hi

I had a 24 week premmie baby Oct 23 09.
Baby had surgery today and he has NEC, it is an active infection so he is still battling it but hopefully wont do any more damage then it has already they have taken away a portion of small intestines that was damaged. Well he had two little holes in it and the intestines had bunched up together to form a seal over them but that had caused a blockage. That has now gone and they have brought the ends outside of his body and will put a stoma bag over them. They are resting the rest of the bowel and will wait for infection to go before testing large bowel to make sure no damage. Bless him his ventilation improved after surgery which was a blessing. Have been told it will be a week before they try to feed him. Fingerscrossed it is plain sailing from here on in!

[plannert]

Yes, my daughter was born at 28 weeks and after three weeks developed NEC. She had 3 surgeries. The removed a part of her intentines and she has to have an ostomy bag in place for about 4 weeks. It was a very difficult ordeal but thank God she was able to overcome and a year later she's doing very well. Let me know what questions you have. I'd be happy to share my experience.

[jillcamp]

My son survived a nasty battle with NEC.  He is now 17 months old 12 months adjusted and is starting to walk and talk!  I had twins at 23 weeks.  My son, Ryan did not make it.  Jacob has been through it all, 18 surgeries in total.  He is alive and thriving and his central line was removed yesterday!  NEC is horrible, but yes it's possible to survive.

[lilelmo8885]

My daughter has survived NEC, it hasn't been easy after getting it but she is still alive. She got NEC when she was 2 weeks old and she just turned 4 months. She had 2 surgeries and her incisions have healed but she does have a iliostomy that was put there after surgery. She is TPN dependent and not eating right now. Did you baby have surgery? If so what part of the intestines did they take out and how much does he have left?