For my entire pregnancy I had been sick. I was on bed rest for 3 months, I had fainting spells and would swell up in a matter of minutes and stay that way for days. I continually told the doctor my blood pressure was high, but every time they checked it, it was fairly normal. When I went to the doctor on February 1st, I was immediately rushed to the hospital with 200/110 pressure. An ultrasound showed Sam was in 5th percentile for size. They gave me steroid shots and magnesium, but with all the help of the medications, Samuel was born February 2nd via emergency c-section. 7 weeks early, he was 3lb 4oz. The days after he was born. He lost nearly a whole pound, but his belly got larger and larger. On February 11th he perforated in 9 spots in his intestines. He was rushed into surgery and came back with 25% less bowel, no appendix and two stomas and a mucus fistula. After a few days he was using a bag and was off of the respirator. He could not digest the breast milk they were giving him with such a short amount of bowel between stomach and stoma so he was on tpn and lipids, npo for 6 weeks. They closed him up March 24th and he flat lined during surgery. Two days later, he took his very first bottle. It was a whole 5mL. He stayed in the hospital 72 days total. He had a lot of really really bad days and more problems than NEC. Every other day, the doctors would say “he is not going to make it through the night” but he did. I brought him home April 12th at 7lb 3oz. Now he is 6 months old and 15lb. Its been a hard road, but he made it.

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As i write this my little boy is recovering from NEC for the 2nd time.
Alex was born 11 weeks early due to me having really bad pre-eclampsia he weighed 2lb 1oz. He suffered a enlarge liver a heart murmur when he was a week old then he started to get better and when he was 4 weeks 6 days old we went to the hospital and he taken a turn for the worst he was placed back on a ventilator, his tiny body had swelled and i was told to prepare myself as they was sure he wouldn’t make it. they was in contact with Jessops at Sheffield and transferred him there it took from 11:30 am till 9:30 pm to stabilize him for him to moved he survived the night the medication seemed to be working then 14 days after he was transferred they rushed him into theatre as he worsened and found the infection had twisted his bowel. he recovered from this and 2 weeks later he was transferred back and seemed to get better and he was there for 3 days and i come into hospital and he was all swelled up again and he had to be rushed back to jessops as NEC infection is back were now waiting to see if he recovers from this. Im a single parent and this website has helped me a lot. My babies dad is in the army and thou were not together and we got issues this has brought us together and this website has helped us too x x

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I gave birth to twins at 27 weeks in October 2010.  My daughter Nancy weighed 1lb 14oz, my son 2lb 3oz. At 15 days old my daughter developed NEC. She was transferred to a different hospital equipped to do surgery should she need it. Within 12 hours she was considered too sick for surgery and was on an oscillator as she was so swollen the ventilator couldn’t inflate her lungs. 3 days later and just clinging to life she was taken to theatre to remove the infected bowel. The surgeon gave her a 50% chance of surviving the op. She did, but the news was bad. She had only 15cm of small intestines left the rest had died. The surgeon said 15cm wasn’t enough for life and that she needed a minimum of 20cm. We were devastated. We stood over her incubator not sure whether to will her to fight or give in.
We discussed turning off her life support machine, the hospital felt it was too soon but advised us to place a ‘Do not resuscitate’ on her.
Nancy clung on and a few days later rallied, she was still horribly swollen, almost twice her size, but pink rather than purple. She had a broviac line inserted and two stoma’s.  Day after day Nancy slowly improved, the DNR was lifted and the plan became to sit and wait. The surgeon wanted to wait 3 months and see if, when he operated again to reverse her stoma’s, she had grown any more bowel. So on the 13th of January she went to theatre. 4 hours of surgery later we were told Nancy had grown an incredible 25cm more giving her 40cm. We were ecstatic!! She had a chance!
4 months later she was weaned of TPN and came home. She is on a special formula, is unable to suck so is NG tube fed but is growing and despite a few developmental delays she is thriving.
The whole experience was exhausting, terrifying and traumatic, having 3 children under three left us feeling guilty as we were unable to all be together at any one time. The twins were in different hospitals and only parents were permitted to visit.
Watching our tiny baby fight for life whilst we could only stand and watch is something few will ever truly understand. I don’t know what the future holds I hope she will live as fulfilling and as ‘normal’ a life as possible.

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Elaine and Chris Jones lost their beautiful daughter, Caitlyn Grace Jones, to NEC on April 16, 2006.

This website was created as support network for parents like us, where both stories and up-to-date research can be shared regarding NEC (Necrotizing Enterocolitis).

Caitlyn’s Story

On Wednesday night, April 4, 2006, my husband and I went to the nearest hospital in an emergency. I didn’t feel well and knew danger was ahead. Within minutes I was diagnosed with pre-eclampsia coupled with HELLP Syndrome. At 28 weeks pregnant, we were told we were having our baby that night.

Caitlyn Grace was born at 3:08 a.m. on April 5, 2006 weighing 1lb, 13oz. She was beautiful! Caitlyn went straight to NICU, where the best nurses and doctors could care for her. Caitlyn was doing great and was building up on her feeds at a good rate.

Then, on Saturday, April 15th, we received a phone call. Caitlyn wasn’t doing well. We thought, “How could this be?”, as I had held her for three hours that day, and she was fine. We were told not to come to the hospital as she would get worse before she got better, but they would be in touch. By 7:30 p.m. (just 30 minutes later), we received another call telling us they thought Caitlyn had NEC and that we should come to the hospital. We referred to our preemie book regarding NEC, and knew the statistics were against her. When we arrived at the hospital, there was about 10 doctors and nurses working on Caitlyn. We knew that was not a good sign. Her stomach was dark coloured and extended. We were shown the x-ray and saw the gases being released into her body.

They needed to transport her to Sick Kids Hospital as soon as possible, where surgery could be performed. Once her blood pressure and breathing were stabilized, the transportation happened. Sick Kids was just 2 minutes down the road and part of us hoped once she made it there the worst was over…but we were wrong.

The first doctor who met us there told us the statistics of babies with NEC, and then told us that Caitlyn would probably not make it through the night. Caitlyn had three blood transfusions and went through a series of tests, but nothing worked.

We, along with our families, sat next to her incubator for twelve hours, while she had her eyes open and watched us the whole time. Caitlyn died in my arms on April 16th, Easter Sunday at 9:30 a.m. That day a part of us was torn away. It was and is the saddest day of our lives. We miss her more than most would ever imagine.

We wanted to create babieswithnec.com to help other parents like us keep updated in the current research on NEC and to support one another by sharing stories. We hope we have helped you…this is Caitlyn’s wish.

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2 days ago my wife gave birth to a full-term, 9.10 lb. baby boy. The doctors were so impressed at how big he was and alert. Upon the first night of being with our son, we noticed he was having some trouble breathing, nothing serious, just sounded stuffed up. They took him into the nursery and tried clearing out any remaining amniotic fluid that may be left in his body. All his readings, as far as, his breathing, heartrate, were excellent, but as a precautionary method he was taken to the NICU. In the NICU they treated him with antibiotics, because they saw his whiteblood cell count was a bit high. Otherwise they thought he was a very healthy strong baby. X-Rays were taken, but nothing was conclusive. In the meantime, we began breast feeding him and he took to it very well. He even filled many diapers with meconium poo.
This morning we were told that they fed him formula and a few hours later he vomitted some mucus and bile. This had the doctors do another x-ray. This time they felt that our boy has the possibilty of NEC. The doctor said that they are not sure because our boy is so big and has good numbers, but the x-rays, and bile in the vomit, send up a red flag…
So here we are scarred out of our wits and looking for any kind of positive sign. I cannot eat, sleep, or even cry at this point. My wife and I are saying our prayers, but we are trying to find solice in others who may have seen a similar scenario. To all the families who have lost a child to NEC, are truly sorry. Please advise…

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