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


10-01-16(19:19:06)

May 7th, 2016 by Katie and Nathan baby lily Louise

Hi we would like to share our story.
On the 9/11/15 our beautiful daughter lily Louise was born at 16.37 weighting 5/13. At our 20week scan we found out lily had something wrong with her heart and was monitor all way up to 39 weeks and delivered her by c section she was also breech the little monkey. It was the most amazing experience watching her be born she was just perfect. She got whisked away to nicu to start tests on her heart and she needed an operation to correct her broken heart she had quite a few issues that needed correcting so we new we would be in and out of hospital. She was going to be transferred on the 15/11/15 to have her op. Lily was the strongest on the ward and when transferred she was going to be on a Normal children’s ward we was so happy she was doing so well I thought we might get her home for Christmas. But early ours on the day of her transfer we got a call lily wasn’t very well so we got there as fast as we could and she looked really poorly her tummy was all swollen she was so pale. They told us she developed NEC I never heard of it before and they said she would need an op to remove the infected intestines. We was so scared but we new how strong she was and thought she would make it an hour later they took us in a room and told us it would be 50/50 weather she pulls through. We was not expecting to hear that my heart was broken. A few minutes later her heart just crashed and we watched them trying to bring her back they got her heart going again but it was to late she was so poorly it would have been cruel and selfish to keep her alive. They switched off her oxygen and we held her till she passed away in her daddy’s arms. I held her for hours crying why did this have to happen she was perfect how can something so cruel happen to nice people. NEC is such an aggressive infection with in hours of getting it she was gone. We had 5 amazing days with her changing nappies we even got cuddles and so did the grandparents we spent hours at her incubater just watching her sleep. Lily Louise was to good for this world I know my life won’t be the same without her I just wish there was more they could done. St Mary’s where great and did all they could and I can’t thank them enough. Good by my darling daughter mummy and daddy love you always. Xxx

01-02-16(22:18:02)

May 7th, 2016 by Deborah Critoph-Hunt

In Dec 1976 I was born by emergency c.section at 38 weeks and had Rhesus isoimmunisation of the newborn, so needed a blood transfusion. It became apparent that I was still very ill, was transferred to Queen Elisabeth Childrens Hospital in Hackney where I was diagnosed with NEC and Peritonitis. The first operation was a laporatomy where they drained my abdomen due to a Perforation of the intestine- Ascending colon. I remained in hospital critically ill and two months later I had a Total Colectomy- With oleo rectal anastomosis. After another month in ICU/on Gibbs ward I was well enough to leave hospital – aged 3 months. I owe my life to the Surgeons/Doctors and nurses of the QECH. I live a full and healthy life. Id like to hear from anyone who had the same/similar surgery at around the same time (1976/77) / surgeons/or parents who would like to ask/know anything about life after this surgery. I have a great interest in Psychotherapy, in particular Attachment Theory. d7c-h@hotmail.com

28-03-16(18:16:37)

May 7th, 2016 by Jess

Hi. I’m writing on behalf of my sister. Her baby was born at 32 weeks at 3#7 oz. he was doing great then developed nec. He has since received 10 days of antibiotic and once again doing great until last night they suspect it’s back! The docs say it’s extremely rare to happen once let alone twice! Both times it happened they were weaning from tube feed to breast milk. They want to do the same 10 day course of antibiotics. Please any advice on questions we should ask, things we should know, etc. I have lot faith that these doc know what’s going on and want to advocate as much as possible. Thanks in advance and I’m so sorry for your loss. Sebastian will be 36 weeks Wednesday and he’s 5#!!

07-05-16(20:58:34)

May 7th, 2016 by Ana

Hola hoy quiero compartir mi historia
Yo tuve ami bebe nicholas alas 29 semanas de embarazada porque me diagnosticaron preclamcia mi bebe fue diagnosticado al poco tiempo que tenía NEC ya ha tenido tres cirugías en la última parte de su intestino fue cortado hasta ahorita el está sobrellevando la pero volvió a recaer el. Ya tiene casi 5 meses de nacido y sigue en el hospital yo tengo todavía esperanzas de que el pronto saldrá del hospital y estará sano pronto sueño con ese día la verdad todo esto ha sido muy difícil para mí como mama de este Guerrero que amo tanto y que me ha echo valorar la vida más ahora solo espero que el pronto se recupere y salga de esta pronto así será dios te pido que sabes ami hijo con todo mi amor de madre me parte el corazón me aterra leer todas estas historias sobre otros bebes que han tenido la misma enfermedad y no logran sobrevivir espero nunca estar en esa situación nunca de verdad lo siento mucho para aquellas personas que han perdido a su bebe por esa enfermedad solo nos queda ser fuertes y seguir esperando te amo Nicolás

14-01-15(17:58:04)

May 7th, 2016 by Heather

My daughter, Taylor, is 15 years old. She is a former 24 week preemie. She spent her first year of life in the NICU fighting for her life. She battled, being on the ventilator for the first 4 months, NEC and bowel resection, and ileostomy, and take down, numerous infections. After her first year, she fought feeding issues, resulting in a permanent feeding tube placed and also had airway reconstructive surgery. She had numerous sets of ear tubes, and had laser eye surgery in the NICU. After being on oxygen for the first five years of life she started kindergarten like a professional. No more feeding tube or oxygen. She fought off colds and such but always came out on top. About 4 years ago Taylor started with episodes of vomiting, nausea, and abdominal distention. The GI doctor diagnosed her with a psuedo obstruction and sent us on our way. After many hospital stays and Taylors daily life being affected she was referred to a new GI doctor. This doctor sent us immediately to a pediatric surgeon and in March of 2014, Taylor had bowel surgery. They removed liters of fluid and air from her intestines, and said they had “fixed” her. A few days later, Taylor was rushed back into emergency surgery with a complete bowel blockage. She came out of surgery a few hours later and the surgeon said she was a sick little girl. Finally after a 22 day hospital stay she came home and within weeks all of her symptoms were back. Taylor is a fighter but with the looks and criticism she receives I worry about her overall psychological health. She looks 9 months pregnant and people assume and talk. She hates her body, she hates feeling like garbage everyday.I can’t find a lot of information on older children with post NEC intestine problems. If anyone has any information I would love to hear it.