What is Necrotizing Enterocolitis (NEC)? Babies surviving after NEC... Share your story with us and others who have had similar experiences... Latest Research - An exclusive human milk diet can reduce Necrotizing Enterocolitis


03-09-14(15:38:36)

May 7th, 2016 by Amber C.

Hi all! I’m a 26-year-old, NEC survivor. I used to really hate the giant scars on my stomach from the NEC surgery, but everyone told me they were my battle wounds growing up. My grandma still refers to me as a miracle, and I get the feeling that maybe she’s right at times. Seeing how devastating preemie births and complications from NEC can be often makes me wonder why I’m still here so many years later.

I was born 3 months premature on April 10, 1988. My birthday was supposed to be July 10, 1988. From what I’ve been told, I was in the hospital for months. All my baby pictures are me in an incubator, hooked up to tubes and machines. My parents couldn’t hold me. My grandparents, aunts and uncles were constantly visiting me in the hospital during those times, holding my hand through the hole in the incubator.

I know my parents did have friends in the hospital, another couple who had a preemie baby boy named Michael. He had NEC too and sadly didn’t make it. Going through this experience, despite having no recollection of it now, does make me feel very blessed to have been a survivor.

For all the parents grieving, or scared, or wondering what’s next… stay strong.

25-09-14(21:21:35)

May 7th, 2016 by Joanna fisher

Me and my husband went to for an overnight stay to Glasgow for a christening and I went into labour. I was 25 weeks and 3 days pregnant with twins. I was 2cm dilated when I went to wishaw hospital following a bleed, as we were from England we didn’t know where we were and therefore had to google the nearest hospital. My beautiful twins Lola and Ellis were born a week later on 3/5/14 by emergency C-section after Lola’s heart rate kept dropping when I was having a contraction. Lola was 1lb 14oz and 31cm long and Ellis was 1lb 15oz and 35cm long. Lola done so well and didn’t need ventilating, she went straight onto oxygen and thrived. Little Ellis wasn’t is such a good state and was ventilated straightaway. They both went straight to neonatal ICU. After a couple of days Ellis’s tummy swelled and he was bringing up green bile, they xrayed him immediately and sent him straight to yorkhill children’s hospital as they suspected NEC and a perforated bowel. When we arrived the consultant said they were putting a drain into his tummy to see if any faecal matter would come out due to a perforation. The consultant immediately put the drain in which confirmed there luckily wasn’t a perforation. He praised the wishaw hospital consultants as the NEC on the X-ray was really subtle and could easily has been missed therefore he was started on IV antibiotics and all feeds stopped. Ellis was a fighter and continuted to thrive, he had his heart duct closed to help with the blood flow to the bowel and a few weeks later when he was transferred to our local hospital he got NEC again however this was found once again early and he was treated with IV antibiotics. We have been so so lucky and it’s really sad to hear the stories were the parents haven’t been as lucky as us. The twins are now 20 weeks and sleeping and growing!! Ellis has recently had his four hernias corrects and had a hard time with that. He went into cardiac arrest during surgery but once again recovered within 6 days and was home again!! We now call him Ellis the cat with his 9 lives.

15-10-14(9:27:17)

May 7th, 2016 by Tonet

MY SWEET SWEET ANGEL, ANGELA
At 30 weeks and 2 days, I decided to call my midwife to check if I needed my blood pressure checked as I felt that something was wrong. I was excessively swollen in my hands, feet,and legs.I also noticed my face was swollen and my eyes were puffy. I saw my midwife 2weeks prior who said my blood pressure was slightly high,but not alarming. When I called her, she told me to meet he at the hospital to check my bp. It was when my nightmare started. I was immediately diagnosed with severe preeclampsia and my baby girl was delivered 2days later. She was great…breathed on her own after a day and was totally fine. After about 10days, I was told she was a bit warm and inactive. They did some tests and all came out normal. I just told the nurse that maybe she really was just always sleepy, as most newborn babies are. They gave me the impression that she was fine. About a week later, I was told they were checking for infection. I thought that may be routinary as she was a preterm baby.They told me she was fine…growing and gaining weight. Two days later, I got a call early in the morning saying she was very ill. I rushed to the hospital and was devastated to see my Angela looking so different the day before. She was staring straight up and was not blinking,and her stomach was bloated. She passed away a day later. All the doctors could tell me was that it was nec and it was already very severe they could not even do surgery anymore. Looking back, I strongly believe she could have been saved if only she was diagnosed early. She was already showing signs of infection days before. I should have not left everything to the doctors. My instinct actually told me something was wrong. The day before she was diagnosed, I felt she had diarrhea which is one of the symptoms of nec. I just dismissed it as nobody said it. I am very devastated, frustrated, and disappointed. My sweet Angela…I will forever miss her smile and her beautiful eyes. If only I could have done something.I am full of thoughts of what could have been. I miss her terribly…She passed away in my arms on October 9, 2014.

16-04-15(22:45:17)

May 7th, 2016 by Maribeth

Baby Ella survival story.
My daughter Ella was born at 26 weeks and 5 days, she like many others I have read about was born in great condition within 24 hours she was on room air by 48 hours they had dropped a ng tube and we’re giving her my breast milk, for almost a week she did great but when she was about a week old the NICU nurse called us on the way to the hopsital and told us that Ella’s abdomen had begun to distend and they were running some films and test but they felt positive her bowel had perforated. My husband and I rushed to the hospital to find our sweet baby girl completely lifeless and in the process of being resuscitated they rushed us away from the grisly scene and brought a priest to our aide to comfort us which did nothing of the sort, it only made me more terrified! However I prayed and prayed for strength and healing for my sweet angel!! The surgeon on call inserted pin rose drains into Ella’s abdomen and we were told that she would receive antibiotics and be extremely closely monitored but most the time Nec would heal itself and they holes in the bowel would close up and she would be ok!! With much faith we stayed by her side and prayed relentlessly that she would heal, day after day for almost two weeks she continued not to get better but worse finally another surgeon made the call that it was time to open her up and see what was actually going on inside her bowel, he was only in the Operating room with Ella for 30 minutes when he came to get us from the waiting room, he informed us that most of her bowel was necrotic from what he could even make out and that her condition was grave and that her prognosis was and I will never forget these words as long as I will live: Her prognosis was BLEAK!! For about ten seconds my heart shattered and then my faith in God overcame my fear and I refused to believe this personally I know the God that I worship was bigger than any prognosis a doctor could give and I chose to believe in God and I refused to give up on my baby girl! After telling us her prognosis was BLEAK… My husband who is very matter of fact asked for statistics and the doctor replied: if she makes it two weeks which I doubt she will than she has about 1% chance of survival… Well momma bear dismissed this and I went back to Ella’s side. She was still open in her abdomen Bc the inflammation was too bad for the surgeon to close her back up and she was left this way for at least a month, the next four to six weeks was a waiting game filled with blood and plasma transfusions, antibiotics, ventalitors, the works, we were
Told over and over again how each day may be Ella’s last, well she survived and got a little better in the time line the doctor gave yet the surgeon never seemed to want to move forward, so we got a second opinion when Ella pulled her picc line out one day and the surgeon on call replaced it, she asked us what was the plan with the other surgeon and when we informed her that as far as we knew he hasn’t made one she was not happy, so this surgeon took Ella on as her patient and a few days later she took her back to surgery and was in surgery with Ella for 8+ hours she dissected, repaired and reattached all of the necrotic bowel to the healthy bowel, also placed a g-tube in the end Ella was left with approx. 54 centimeters of short bowel, and no illocecal valve. For the next 3 months she was started on continuous feeds a little at a time and when we went home 5 months after her birth from the hospital she was on a continuous feed pump. We since that time have been going to Cincinatti Childrens Hospital for all of her GI care and she is now a 3 almost 4 year old living breathing vibrant beautiful angel of a miracle!! She still has the g tube but we only use it for periodical bolus of a supplemental nutrient and she eats and drinks by mouth like any other typical child!! Our family has been through it we understand the pain and fear you might be feeling. Have faith and know there is light at the end of the tunnel and these babies are so much stronger than we are! Your in our thoughts and prayers always all of you!!

18-12-14(5:02:03)

May 7th, 2016 by Mandy

This is the story of my miracle, Sadie. Sadie is a twin, and they are 27 weekers. They were born healthy, needing no resuscitation or even help breathing. Things were going great, and we felt that our girls were coming home before expected. Then, at 4am when they were 15 days old, we got the phone call every parent dreads. Our Sadie was sick. She was throwing up her feeds and desatting, and she was going back to NICU. They would be in touch. All I could do was cry. At 6am, they called to say she’d been intubated, at 10 they called to say she was being transferred to Children’s Hospital for surgical evaluation and she had NEC. It was explained that she was very sick and there was a chance we’d lose her. We started making plans to get our 4 oldest kids somewhere else since we have no family where we live and the hospital is 2 hours away. At 1 they called and said we needed to come now, they were afraid she would die before we could make the trip. My life was crumbling.

I’ll never forget seeing her. Her tiny body was purple and swollen all over, the oscillator was causing her whole body to shake. She looked lifeless. Her heart rate was over 200, blood pressure was barely sustaining life, and she was satting in the 60s. They told us there was one more drug they could try if her BP dropped any lower, but it was a code drug. We told them to try it. They told us even with that she was not likely to survive and we should consider removing life support and should prepare to say goodbye. I stood at her bedside and told her how sorry I was. I didn’t want her to hurt. They promised she was not, that they’d give her more meds if they thought she was in pain. I’d never felt more helpless. They ended up starting the Epinephrine, and slowly but surely she stabilized. She was still very critical, but she was critically stable.

Weeks went by and she went from the oscillator to regular vent to CPAP. Things were looking up, but they still felt confident she’d lost all her bowel. She had been unable to have surgery because she was too unstable. Then she seemed sick again… tests confirmed E Coli Meningitis. She had another huge obstacle, linked straight back to NEC. She was on more meds and intubated again. Again, she fought through it, but was left with devastating brain damage.

Fast forward to now, Sadie is 8 months old, and has endured 11 surgeries, abdominal and neurological. She came home a week before they turned 7 months old. She’s got just 28cm of bowel left. No colon. She has a jejunostomy that they hope to eventually be able to take down. She’s got a G tube but only gets 2cc/hr continuously. We hope to increase feeds over time. She’s also got a central line and gets 24hr TPN and lipids overnight. Due to the brain injuries she’s delayed significantly and makes no noises. But, she’s beginning to make small sounds and show emotions. She’s surpassed expectations her whole life. She does not have a CP diagnosis and they have hopes for slow progression through therapy. She’s a happy little girl and there’s definitely a lot going on in there. The baby everyone gave up on is proving them wrong. She’s my world and I have learned more from her in 8 months than anyone else in my life. She’s so strong and I’m so proud of her. There is hope for miracles, mommies and daddies, don’t lose hope!