Intestine perforation=NEC??

SOOO confused right now! I am the mom of a 26weeker...she will be 2 weeks old tomorrow. Over the weekend she was given her first bit of breastmilk and later that night her intestine perforated. They put her on antibiotics, stopped feedings and placed a drain in her abdomen. They told me it was serious, but they believe it will heal itself. I've been looking up intestine perforation online today and everything I read said that it is a symptom of NEC (which I just learned about). They haven't mentioned anything about NEC to me! Does bowel/intestine perforation absolutely mean NEC?? I will be going to the hospital tomorrow morning, but curious about any other preemie parents who have experienced these problems. Anyone's child have a perforation in the intestine that healed on it's own???? Thanks

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I believe I remember reading that the Duggar baby (Josie) who was a 25 weeker had a spontaneous bowel perforation and she had antibiotics and a drain and it healed on it's own. I don't think it necessarily means NEC. Prayers and hugs being sent your way!

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Thank you for the prayers! I just hope they would have told me if they believed it was NEC :( I've spoken to the doctors/nurses everyday since it happened and no one has ever said ANYTHING about NEC. Ugh, so worried =/ she was doing so well.

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My impression of NEC is that is takes some time on milk feeds to occur, so the next day would be unlikely...

In any case, welcome and I am sorry you are going through this. We have many veterans on this site so feel free to post queries. Once this heals, I hope you have very boring NICU journey.

I found this book to have as a handy reference:
http://www.amazon.com/Preemies-Essential-Parents-Premature-Babies/dp/067103 491X/ref=sr_1_1?s=books&ie=UTF8&qid=1283998195&sr=1-1

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NEC means not just a perf but part of the bowel tissue itself has died, ie cannot be repaired. A baby does not have to be milk fed to have NEC. We had it with TPN before feeds were started. I would guess that if they placed a drain they are assuming the bowel can repair itself and there is no dead tissue. You may want to ask to be sure.

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My son bowel perforated when he was just about a month old. He was born at 25 weeks. they put a drain in and it healed all on its own. That was the middle of August of 2007. Then at the end of October he got really sick and that found out that he had NEC. The perforedted bowel had healed the it started slowly dying. So he had to go have surgery to remove 10inches of his bowel. We almost lost him. So if her bowel heals itself please insist they watch her bowel closely while she is in the hospital. And keep close tabs on her after she goes home. Nick was doing so good ans we were on the road of going home by his due date and then Then NEC, its awful. He ended up being to sick to go back in the few days to put his intestines back in so he had an ostomy bag for 3 months and he needed so much help on the vent they gave him a trach. The nurse practicioner uses his before and after belly pics at conferences to show them how it has healed because it was wide of and opening and he was so swollen. So please do everything in your power to make sure they check her belly everyday. If you would like to read more on Nick we have a carepage you can visit. The carepage name is Nicholas715 and the website is www.carepages.com
Good Luck and my prayers are with you and your family.

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Check out this link:
http://kidshealth.org/parent/medical/digestive/nec.html#
It explains NEC fairly well. According to the info a bowel perf is NEC. We had a bowel perf with feces in the abdomen and had surgery right away to remove dead bowel and place an ostomy. Lots of kids survive NEC but like luvnick715 stated you should watch for any further signs very closely.

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Our 24-weeker's bowels perforated at four weeks, a few days after his PDA ligation. They placed drains on each side if his abdomen. We were also told that it would heal itself with time. It's been almost two weeks and he still has them. (So frustrating.) Although we were told he doesn't have NEC they take every precaution.

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The Drs told us my son had nec even though it was a perf from a med he was given for his heart. I think they just generally classify if all under nec. He was 5 days old and had never been fed. My son had surgery. I hope it heals without surgery for your little one.

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My son was also a 26 weeker. He had a perforated bowel at 6 days old. They did the exact same thing - stop feeds, anitbiotics, drain. It healed on its own and has never caused him any complications. It does not mean NEC. They will take every precaution and watch her but it doesn't mean that necessarily.

Prayers coming your way for your little one and a speedy recovery for that.

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Thank you all for the responses...I will be asking the doctors more about it today. For those who had a perf that healed on it's own, how long did they take to heal?? I'm scared that once it does and they try to feed her again it will happen again =/

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Ch3lsea,
My son had the same exact situation as jomi, WyattandBailey, and p2Mommy. He had never been fed; the tear was a result of the medicine to close his PDA. This is what we were told anyway. They said it was NEC but not "true" NEC. We were confused too. The important thing is that your daughter has a Penrose drain in to get rid of any stool from spilling into her abdominal cavity. How the doctors know what to do in these situations is amazing.
My advice is to keep you up to date on how her belly measurements are. They will measure her girth throughout the day to make sure things are healing. I would also inquire about output. This can give you an idea if the tear is healing or not.
The most important thing I would demand is an upper and lower GI study to make sure there are no strictures or open tears once they are ready to put her back on feeds. Children's Boston did these tests and I got to see the dye move through Benjamin's system. I was reassured after the test that he was ready for breast milk. I will tell you that unfortunately it took forever before we could feed him. Several weeks I believe.
Good luck, keep us posted, and post any questions or concerns you have. There are so many of us who have been where you are and want to share advice.

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My twin sons both were diagnosed with NEC. My son Ryan got it first. It was from his feedings. His cleared up with antibiotics. He was NPO for fourteen days. When the feedings started up again, I was so nervous but he hasn't had any problems since. He is now almost ten months old. He never had any type of perforation. My other son Jaden got it also but the next morning passed away from it. It attacked his intestines that quick! The doctors knew something was wrong when Ry had blood in his stool and he vomited a couple times. An xray confirmed NEC. So for me, NEC doesn't always mean a perforation. I truly hope it's not NEC. Keep us updated!

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No this does not always mean NEC...If it reoccurs and sepsis follows they will diagnose her with NEC. Ayden had a bowel perf at about 2 weeks old and was given anti-biotis and had a drain tube placed but never got NEC...A bowel obstruction happened later from the scar issue from the perf but that is the extent of it. Dont worry girl, the Docs will let you know when there is a bigger concern like that!

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Benjamin0106, thanks for that info, I was about to add a new post on the time it takes for the perforation to heal. Yours and Ch3lsea's story is more similar to ours than it seems. Our little boy only had his milk for 3 days before they decided to do the PDA ligation. Ch3lsea, I pray your little one heals quickly!

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My son perforated first, had surgery for that and then 5 days later had NEC. He had 40% of his bowel removed and almost died multiple times. He was TPN dependent for a long time because of it which in turn caused even more problems (liver failure). Praying your baby's perf is fixed without surgery. It's so scary, but it is possible to heal on it's own.

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Realized I never updated, I was told that she does in fact have NEC :( She has been on the antibiotics for a little over a week now and the infection is still lingering. Now they are talking about doing surgery, but aren't sure yet. The x-rays show that she is not getting worse, but that there is also little change. So now we're just waiting...ugh and I don't know what to do, the waiting kills me. I've been walking around with a knot in my stomach =/ If you have a minute please say a little prayer for Kayleigh...maybe we'll somehow avoid surgery and she'll get past this on the antibiotics alone.

Question for any mom's who have dealt with NEC...if it went away without surgery, how do they know when/that the intestine is healed and there are no dead areas??? Do the xrays show enough that they can tell without surgery?

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My son Kevin now 34 weeks actual 26 adjusted had sever NEC that required 10 surgeries.
I knew parents in the NICU that had babies with NEC that was cured with the antibiotics and stopped feedings and time to heal the intestines. I was also told that girls did better than boys in general in the NICU with illnesses.
I will pray for Kayleigh to heal and get through this illness with no to little complications.
Tanya

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Thank you for the prayers Tanya! So glad your little guy made it through that and that he's ok...10 surgeries!? Wow, what a strong little man. You are amazing for holding it together through that! I am still hoping that somehow her intestine will heal on just antibiotics, but at the same time I don't want them to wait too long if they think she does need surgery for it...she's just so tiny, it's terrifying to think she may need surgery =/

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Hi Ch3lsea,

I am so sorry that you are going through this. My son had a bowel perf when he was 3 days old after medication used to close his pda. There is nothing scarier than having a consultation about your 1 lb 7 ounce child with a room full of surgeons. They ended up operating on him and had to cut out a very small section of his intestines. There was another area that was borderline so they made the decision to close him up and do another surgery 2 days later. When they went back in, the rest of his intestines healed and the surgeon was able to reconnect the area that he had disected only 2 days before (we were told that they were hoping to be able to bring it up to the surface for an ostomy bag but this was far better). He did really well for the next 2 1/2 months and then he developed NEC again at 35 weeks adjusted. We were in the step-down unit already and got rushed back to the NICU for emergency surgery when the x-ray showed free air in his abdomin yet again. The surgeon was really shocked when he found that he had alot of pneumatosis (described to me as looking like a peeling onion) which let the air escape but no visible perferation or dead bowel. They closed him up, started him antibiotics, NPO for another 2 weeks, then an upper and lower GI to confirm no obstructions. They found no obstructions and slowly started his feeds again. We had some jaundice issues from being on the TPN for so long but time and medication helped cure that too.

Flash forward 1 year and I have the most beautiful 22 lb 1 year old who you would never know went through the ordeal that he did. He eats, he poops and I am finally getting to the point were I am not obsessing over every little thing. He does have a really good battle wound across his belly to prove it but I think it is beautiful.

So a very long winded message to let you know that there is hope. These babies are amazingly strong and so are you. The blessing in all of this (and I know that it is hard to see now) is that you will never take a day with her for granted. It took me a long time to realize it but that was a great gift to me and my husband.
We see parenthood in a light that many others cannot and we are very, very grateful.

I will say a special prayer for Kayleigh and your family. Stay strong momma.

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Ryansmommy- Thank you for sharing...and for the prayers! I'm glad your little guy is doing good, it's great to hear uplifting stories like yours...it gives me some hope that one day I'll be able to bring her home and we'll be able to enjoy being a family.

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