Comments on: FAQ - Necrotizing Enterocolitis

By: Eloise

Eloise — Mon, 16 Jun 2008 00:38:17 +0000

Hi Bette how are you? Just waned to share my story with you and all. My 30 week preemie developed NEC 1 month afer birth. He had 2 surgeries to see if his bowls could be saved, after the third surgery he had an ostomy placed, that was taken down 2 months later. He now lives with chronic pain and is constantly crying. He has mal-absorbtion problems and is under weight. The infection caused neurological problems and he is delayed. I don’t know what his future would be like. I asked the doctors not to intervene if his quality of life would be compromised, they assured me that he would be fine. I feel betrayed, my son is in constant pain, he cannot sleep, I cannot comfort him, he has not grown much, at 5 months he looks and acts like a skinny newborn. A person said “he is better than dead.” I was fine with letting go. My son would be in a happy place; is it worth to torture a child because our love for him wants him here? I love him so much and his pain is my pain, I cannot find resolution yet, I am in a “wait and see” game. Will his life improve? what about the neurological damage? I cannot find answers or survivors to share their stories with me. I feel alone and burdened. I cry everyday and am seeking therapy. I’m sorry for your loss, I hope you don’t find insult in what I say, but at least you can find resolution and move on. I am in limbo and don’t know when and if the pain will stop. My son’s physical pain and the emotional pain of seeing the one I love sruggle through life. Are there any survivors? Please share your experience with me, will the chronic pain stop? don’t worry about giving me bad news, at least I can deal with what I know, its not knowing that makes me anxious. Thank you.

By: Bette

Bette — Wed, 31 Oct 2007 19:15:43 +0000

I HAD A SON IN JULY 9 WEEKS EARLY AND ALSO DEVELOPED NEC. I WAS RUSHED TO THE HOSPITAL AFTER HAVING MIGRAINES AND PAINS IN CHEST , AND SOMETHING DIDN’T FEEL RIGHT. THEY TOOK MY BLOOD PRESSURE AND IT WAS IN THE 200′S IMMEDIATELY I WAS HOOK UP TO EKG MACHINES AND PUT ON MAGNESIUM. AFTER SEVERAL HRS, MY DOCTORS TOLD ME SHE WAS SCHEDULING A C-SECTION @ 7:30 PM THAT NIGHT. SO OUR SON WAS IN THE NICU FOR 28 DAYS .BORN @ 2.5LBS VERY SMALL AND FIESTY AND THINGS WERE GOOD . HE WAS BREASTFEEDING AND GAINING WEIGHT AND VERY ALERT… HE WAS PERFECT. MY HUSBAND AND I WENT TO DISCHARGE CLASSES AND EVERYTHING. THE HOSPITAL SAID IN 2 WEEKS HE COULD COME HOME ON A MONITOR IF HIS BRADY EPISODES WERE SLOWING DOWN. BUT MY HUSBAND WENT OUT OF TOWN AND I DID MY USUAL DAY ROUTINE TO THE HOSPITAL AND SEE OUR SON . AND THEN A NURSE SAID YOUR SON IS SICK AND I HAD NO IDEA WHAT WAS GOING ON . HE TURNED REAL WHITE HIS STOMACH WAS HARD AND PURPLE . IT WAS CRAZY MY HUSBAND RUSHED HOME FROM A BUSINESS TRIP , BUT THIS ALL HAPPENED IN A MATTER OF HRS! OUR LIFE COMPLETELY TURNED UPSIDE DOWN , SO HE WAS FLOWEN TO CHILDRENS HOSPITAL IN DC AND HAD EMERGENCY SURGERY LATE THAT NIGHT (3 HRS) . A LARGE PORTION OF HIS INTESTINE WAS BAD AND THE DOCTORS TRIED TO SAVE THE REST . SO HE WAS ON ANTIBIOTICS AND WERE GOING TO GIVE HIM ANOTHER CHANCE. SO THEY DID ANOTHER SURGERY THE FOLLOWING DAY, WHEN THEY WENT BACK IN IT WAS WORSE AND THERE WAS NOTHING THEY COULD DO . I CAN’T SAY ENOUGH ABOUT CHILDRENS HOSPITAL THEY GREAT AND GAVE US 2 CHANCES TO SAVE OUR SON’S LIVE . AFTER HIS SURGERY IN THE MORNING THE STAFF CAME BACK AND TOLD OUR FAMILY, THERE WAS NOTHING ELSE THEY COULD DO ETC. AND MY HUSBAND HELD HIM TILL HE TOOK HIS LAST BREATHE AUG 28 TH 11:15 AM, AT 28 DAYS OLD. BORN ON JULY 30TH - FUNERAL SERVICES ON AUGUST 30TH 2007. I DO NOT KNOW HOW I’M GOING TO GET THROUGH THIS? PLEASE HELP.

By: dougg

dougg — Tue, 03 Jul 2007 19:57:56 +0000

My son was born 5 weeks early and he developed NEC at 3 days old, we tried the medical path for two days and on New Years Eve a radiologist noticed he had previously ruptured, he was sent into surgery where they had to remove about 45% of his transverse colon(if you are going to get NEC its the best place to get it as the surgeon told us) he did well for over three weeks and actually got to go home (which he was the first to do that at our hospital) while waiting to get reattached. On day 2 at home he developed a blockage at his stoma back to the hospital he went, after a 8 hour surgery he was out and to the surgeons suprise with the lack of scar tissue he elected to re attache and remove his appendix. Now Connor is 6 mos old and every day we do a poop dance(when he goes) and he is 18 lbs. and 28″ tall and normal development wise, but its always in the back of our mind stictures scar tissue bowel blockage

By: Jon Mikel Iñarritu

Jon Mikel Iñarritu — Tue, 03 Jul 2007 19:55:26 +0000

Tracy:

I’m sorry for your lost. The physician assistant had to realize the need of ask a pediatric surgeon for further evaluation.

By: TRACY

TRACY — Tue, 03 Jul 2007 19:30:55 +0000

MY SON WAS BORN PREMATURELY AT 27WEEKS. ALTHOUGH HE WAS PREMATURE HE HAD NO BRAIN BLEEDS AND WAS WEANED FROM THE VENTILATOR AND PLACED ON CPAP. HE HAD TO RECEIVE PHOTOTHERAPY FOR HIS JAUNDICE, ABOUT DOL #9 WE NOTICED THAT OUR SON BELLY LOOKED SWOLLEN AND TOLD THE PHY ASST SHE PERFORMED AN ABDOMINAL XRAY AND STATED IT WAS REMARKABLE. IN THE MEANWHILE MY SON WAS EXPERIENCING FREQ APNEA’S AND BRADY’S AND HIS FEEDINGS KEPT BEING INCREASED. ALSO, MY SOME HAD A BOWEL MOVEMENT ON THE 4TH OR 5TH DOL BUT ONLY AFTER RECEIVING A GLYCERIN SUPPOSITORY. ON DOL #12 MY SON DIED FROM NEC. POST AUTOPSY SHOWED THAT HIS INSTESTINES WAS DUSKY COLORED BUT DID NOT SHOW HE HAD PNEUMOSTOSI INTESTINALIS. BUT LOOKING BACK AT HIS FIRST ABD XRAY IT SHOWS HE HAD DILATED LOOPS. IS IT POSSIBLE THE PHY ASST DID NOT RECOGNIZE THE THAT DILATED LOOPS, FREQ APNEA’S, BRADY’S AND DISTENTION ARE SIGNS OF NEC. I JUST WANT TO KNOW IF THEIR WAS SOMETHING MORE WE COULD HAVE DONE AS PARENTS TO HELP DIAGNOSE NEC.

By: Tasha

Tasha — Wed, 06 Jun 2007 17:47:37 +0000

My son was born six weeks premature and was doing very well. He weighed 6lbs 4 oz.
He suddenly developed NEC and it was determined that all of his bowel was damaged. The doctors are really give him almost no chance of survival. I was wondering if there were ant cases this severe and the baby has survived and if so what treatments took place. I am really desperate at the point and am looking for any kind of reassurrance that my son has a chance.

By: kerry browne

kerry browne — Thu, 05 Apr 2007 17:43:32 +0000

my son was born 14 weeks early he is now five weeks old and 4 days ago he was diagnosed with nec since being diagnosed he has had a operation to remove the dead bowel he has lost about 45% his small intestines… i dont no what the out come is going to be. he has got a stoma which the surgeon has said he will operate in six months to stitch his bowel back together..

By: Erin Lindeau

Erin Lindeau — Thu, 08 Mar 2007 18:26:59 +0000

I am a healthy 15 year old female who was born with NEC. At two months old I had 3/4 of my intestines removed. I had a 1% chance of survival but the good Lord wa swith me. I now have only 17 inches of my small intestines, and 22 inches of my large intestines. I just wanted to let everybody know that because of this medical history that I have, I am now currently interested in the medical field.

By: Jessie

Jessie — Mon, 05 Mar 2007 13:11:01 +0000

My daughter was born at 25 wks gestation and weighed 430 grams. It has been approx. 6 weeks since she was born and she weighs almost 600 grams. She has had some growth and feeding setbacks such as PDA (which was ligated) and an infection which resulted in low platelets and possible DIC. I asked her doctors if maybe she had NEC, because I noticed her belly is very swollen. They say that she doesn’t have NEC and this is based on looking at x-rays. We are stationed in Japan and she is at a Japanese NICU in Aomori. I think these doctors are amazing and I trust them, however, are there any other diagnostic tests to rule out NEC? What sort of questions should I be asking? Also, is there a time reference window of when NEC is no longer a risk? In addition, she was getting breastmilk only for her feedings but now she is getting breastmilk mixed with formula, fortifiers, iron, and MCT. She gets about 9ccs at each feeding.
Thank you for any input,
Jessie

By: Ex Utero

Ex Utero — Wed, 28 Feb 2007 03:09:32 +0000

Statistically, his risk of additional perforations is essentially zero. The kind of perforation he had happens most often in the first two weeks of life and almost exclusively in the first month. There is some risk of a different type of perforation or complication because he’s having surgery in the period immediately afterwards, but once he gets up to full feeds afterwards and stays there for a couple weeks he should be in good shape. He will be at a much higher risk for constipation through out his childhood and may benefit from a soluble fiber laxative when he is a little older and being potty trained (or prune juice when he is younger).

By: nmanley

nmanley — Wed, 28 Feb 2007 01:10:38 +0000

My son had a perferated intestine his first week of life. He was 15 weeks early, he is now two months old. They are going to be doing surgery next week to determine if he has a stricture or if there is any other problem with his intestines. I was wondering at what point will the risk of his intestine perferating again be gone?

He has a twin sister who has not experienced any intestinal problems and has been on full feeds for awhile. Is she passed the danger point or could she have the same thing happen?

By: bh1991

bh1991 — Tue, 06 Feb 2007 20:57:09 +0000

My son was born prematurly and had NEC. He is a healthy 10 year old boy now, with the exceptin that he suffered hearing damage due to the strong antibiotic, at least that is what I have been told. Anyway my question is this.. He has always had bowel movement problems. He has extremly large “poop”, and will go forever without having a movement.Now he had surgery to remove the dead tissue then had another surgery for strictures. I was wondering if with the surgeries could this effect his bowel habits in any way. His doctor has put him on a laxative that worked for awhile . Just wanted to know of you had a thought.

By: Jon Mikel Iñarritu

Jon Mikel Iñarritu — Wed, 31 Jan 2007 06:04:55 +0000

E. Jansch: What kind of treatment did she got?

By: eileen jansch

eileen jansch — Tue, 30 Jan 2007 17:36:41 +0000

my granddughter had nec she was born 9 weeks prem she is now home and is 3 months old but she seems to strain to pass any stool if she dose atall she struggles to have stool once a day can you give me any advice please yours sincerly e. jansch

By: scan man’s notes » TNT, NEC & the (possible) origin of a “World Leader.”

Sat, 02 Sep 2006 19:33:25 +0000

[...] At about the same time I had seen this letter to the editor in last week’s issue of the NEJM. The first letter is from someone that many of us know - Dr. Gordon from Tales from the Womb. Necrotizing Enterocolitis (NEC) was also featured in last week’s Radiology Grand Rounds. [...]