Yes, my daughter was born at 28 weeks and after three weeks developed NEC. 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.
My daughter was diagnosed with NEC last week and hearing and understanding this condition was the scariest moment of my life. She had to have surgery and seems to be doing well now, but I an always afraid she will not be. How did you guys get over the fear of NEC?
NEC is when the tissue of the intestines dies, thay are not yet mature so when you introduce them to food they sometimes get NEC. If they catch it at a early stage they can just stop the feeds andd give time for the intestines to heal, If they catch it too late they most likely do surgery and remove the dead bowel. They give the baby an iliostomy or colostomy and then when the bowel heals they restart the feeds. Some babies may need a bowel transplant depending on how much bowel is removed and which parts. Adriana is short gut meaning she has very little intestines. All this due to NEC
It really depends on what damage NEC did. My daughter as well had surgery and they were only able to save 45 cm of small intestines and removed all her large. She is considered short gut and has a iliostomy. She has been tpn dependent since her surgery. She has not been able to eat since she does not absorb any food due to having very little intestines. I really dont know what the future holds for Adriana but hopefully with time her body and intestines can adapt. She will get omegaven soon which will help heal her liver and spleen. It is another lipid than the regular one made from soybean oil, this is made from fish oil and is not suppose to make the liver swell. It is saving many short gut babies lives. NEC is a very nasty disease but depending on it's harm, each kid is different and maybe your daughter won't have any problems, just take it one day at a time. If you want to talk e mail me at ***@****
Hi, my baby boy did also pass away at 5weeks 2days from nec. This happened 3 weeks ago, its just a horrible infection. My son had 127cms of bowel removed. Its so hard to see your baby go through so much pain. Our little boy had 2 big operations and it was too much for his little body.
I'm trying to find a forum for parents with babies that have had NEC. I live in Sweden and have 3 girls and a baby boy. Our boy was born in week 26 and was a healthy premature at start. Five days old he developed NEC and got very sick quickly. He had to surgery and had 20 cm of his ilium removed (had 2/3 left at that time). He had a iliostomy for 3 weeks and it didn't work properly so they closed it and at that second surgery had to take another 10 cm of the bowel. He had TPN with omegaven for weeks and we where trained at the hostpital to take care of this on our own. He could be dependent on TPN for weeks or years, no one could tell. After his second CVK they decided that we should try to increase his oral feeding, and it worked! We are now home with our son, he is 7 month old (4 months) and he is as healthy as anything! He is a miracle!!! Mail me if you know a forum for NEC parents or if you have any questions!
Helena (Stockholm, Sweden)
Our daughter was born at 33 weeks and seemed to be doing great until she was 8 days old. We found out she to had NEC she was rushed to surgery, and did not make it through the night (oct.1) It's been 3 weeks now and i am still not understanding how she went from doing great to being gone and how no one in the nicu caught it in time.
Our Son had NEC and 25cm of ileum removed(half of his small bowel) so has got SBS, currently in hospital 8 weeks old 3lb 10oz (300gram due to being so swollen which they don't know exactly why it is as he has only just been transferred from yet another hospital). Does anyone have any information regarding this.
my little girl was born at 27weeks and at 2weeks she developed NEC, was very ill and had the surgery also to remove dead bowel and was so black and dead we dont know how much was removed to this day. she was in 18weeks in hospital, was tpn dependant an at 15weeks she bounced back..off tpn managed small oral feed an ng feed mostly.. now she 26month and full off life. anyone wishing to chat im happy to x
My son Kaleb was born August 16 of 2011 and came out kicking and fantastic. Ten days later he got NEC. He had sergury and lost all of his large intestine and part of his rectum and only had 36 centimeters of his small intestine left. Seven days later he died. I stil cry to his day. Nec is very common. Nec comes from the dowels losing oxygen and blood flow, but also from the food. He was born on the 29th week. If you find out your child has a chance to get this do a lot of research. Do not let the doctors take him or her off air assistance until you are sure that yor baby will be strong enough to breath on its own. On day 7 they took my son of air assistance and by day 10 he was so far into the Nec that he was not going to survive. I believe that a couple things cased the NEC. NEC is a bacteria that kills the bowels from the inside out. Be very careful and ask if the doctors think that your baby has a chance to get this. Study study study. Good Luck to all of you parents and I wish the best for you and your new babies. God BLess
hi, if you can I would like to know how your daughter is gone with her recovery from nec. my son was prem 28 weeker, got nec at 32 weeks, lost ascending, traverse, and descending sections of large bowel and 30 cm of small intestine including the ileocecal valve. it has been 2 months since first operation, he has had 4 ops in total and has an illiostomy. he hasn't been able to establish milk feeds and has high congugated bilirubin levels due to tpn. I am really worried he will not adapt and have serious continuing issues of not absorbing due to having only 60cm of small untestine, liver damage from long term use of tpn, stoma reversal difficulty due to potentially causing damage to remaing large bowel (has only sigmoid and rectum remaining and is clip/stitched and dropped internally currently) and then issues with loose/watery stools if connecting surgery is successful. how is your daughter? is she ok, still on tpn at all, intestines reconnected, stool issues, diet issues, liver issues? any and all information would be so appreciated as I havnt been able to connect with anyone who's baby lost all of large bowel and a good portion of small intestine to know what to expect over the coming months and years. I do hope your daughter is fine and has recovered from this horrible horrible disease.
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