I had my little boy 5 weeks ago very early at 28 weeks. He was at Exeter hospital and only recently transferred to Bristol for treatment on his head. Just as we were getting hopeful regards his return to Exeter we were told today he had NEC, being assured they have caught it wary we are told to remain hopeful! Easier said than done, especially when I am sure our sons NEC has been partly caused by the hospital not continuing with the routine feeds he managed and got used to at Exeter of 7ml every hour and doing it their way of 12ml every 2 hours, the 12ml is too much at one go and I believe has there for caused this. Can anyone else say a change in feed pattern etc has played a part in their little angels having NEC? xX

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My name is Lisha Barnes and I lost a baby to NEC on Thanksgiving of 2011. I had my baby on November 11, 2011. He was rushed to the NICU and treated by the best team of doctors and nurses. I was told that he was progressing greatly. He had even been taken of all of the oxygen that he was on and needed no assistance.I was nervous in the beginning because it was so scary, but I finally got used to it. I lived two hours away from the hospital that was treating him, so I had left for a small break. I received a phone call that told me my Melvin had gotten very sick. In less than an hour a dr. called me back to see how long it would take me to arrive. I was there in exactly two hours. His condition did not improve. I cried and prayed for about four hours and the dr. told me if I wanted to hold him while he was still breathing to come quickly.My baby was in my arms when he died.This is now the fourth baby that I have lost prematurely, but I still have faith that God will give me all that I need to endure this journey. It is not an easy thing to go through, I pray for those that have lost babies, and I pray for those that will lose babies to this disease. Just hold on to God’s unchanging hand.

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My little girls were born october 1 2011. I was 31.5 weeks at the time. I was ecstatic that my body made it past 30 weeks. I never in a million years thought anything would happen. Londyn was born 2 11 and bryn was 2 7 . The drs were raving how they were above average preemies but it was always followed with is all we worry about is infection.
It was the happiest I had ever been in my life. 5 days after they were born at about 5 am i got a call . Bryn had contracted NEC. The drs said we caught it early shes on antibiotics and doing great. Death was never a thought. About two hours later the drs called and said Bryns doing fine but we want to transfer her for evaluation. He again reassured me its just precautionary and she was doing fine. I rushed to the hospital , my little angel stomach had turned green. I still felt confident that she would make it. I was so ignorant!! It had been a raining day and i was more nervous thay the ambulance would get into an accident. I cried and cried and told them to please call me as soon as she arrives. Two hours later I got the call. Bryns intestines perforated and she had died. That phone call replays in my head everyday. I had to bury my little angel. Londyn left the nicu 6 weeks later. Londyn is my miracle baby. She has a little angel watching over her. NEC is a horrible disease!! More research needs to be done on this. How in 2011 do they not know a cause!

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I had my little boy Kian James Grant on the 31st of July 2011 he was born at 27weeks an 6 days weighing 1.35kg he was quite poorly for the first few weeks and had PDA he was giving medication to close it and it did close but a week later it opened again but he seemed to be coping well i expressed milk for him for 5 weeks but as he was coming on so well i wasn’t getting enough milk to keep up with him so they started giving him nutriprem which he was tolerating well he went up to 2.14kg, One night we got a call to say he had been giving his first bottle we were all so delighted thinking he was a step closer to coming home. The next morning the hospital called to say he had a hernia an they needed to transfer him to another hospital to deal with this. He had his operation for a double hernia and was transferred back to the hospital nearer to us he recovered well from his op but then he started with a stridor, they had damaged his windpipe after they had ventilated him for his op so he had to be transferred back to another hospital to investigate it turned out they had to operate on his windpipe to widen it as it had been quite damaged he would have to be sedated for a week to let it heal. We went to visit him an the tuesday an the surgeon was happy with him and it was healing well they even started his feeds again. we went to see him again on the wednesday. we had been home a little while when they phoned to say he was poorly and his stomach was a little bloated they thought he had NEC they started him on antibiotics and kept a very close eye on him scanning and xraying him by saturday they said he needed surgery then the dreaded call came 95% of his bowel had died and they could do nothing for him i sat with him until he died at 4.30am on Sunday 9th October aged 10weeks we are all devastated i keep asking so many questions why did this happen when he was 10 weeks old an why did they leave him from tuesday until saturday until they operated ???? i miss him so much :’( x

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Julia’s Survival Story

Like so many others, my sweet Julia was born 11 weeks early after I developed severe pre-eclampsia and HELLP syndrome. After arriving at the hospital with severe pain, vomiting, and extremely elevated blood pressure, we were told just two hours later that I would have to deliver immediately, and she was taken by c-section just a short time after.

Though so tiny, she was 2 pounds 13 ounces, which was a great size for her gestational age. Every time we spoke to her doctor, he would tell us that she was the “superstar” of the NICU, and her progress continually amazed all of those that cared for her. We began to believe that we would be in for a relatively short NICU stay, perhaps just a few weeks, until we could establish feeds and get her off the small amount of respiratory support she was using. I was told that they would start supplementing my breast milk to help her grow more quickly and get her off TPN.

When she was 11 days old, we left the hospital to have lunch with our older children. While Julia had seemed a little fussy that morning, she settled down for a nap when I left, or so I thought.

A little less than three hours later, we received a call from her doctor that every parent fears. We were asked to rush back to the hospital as Julia had developed NEC and was being transported to the Children’s hospital across the street in the event that she needed surgery. When we arrived, she was already on the ventilator and her belly was very swollen. It took them about 2 hours to facilitate the transport, even though the hospital was just a block away.

When we arrived at the Children’s hospital, we were told that they did not believe that they would need to operate, but that they would watch her closely. She was pumped full of fluid, blood, and antibiotics for three days before they finally took her to surgery. In that time, she more than doubled in size with increased fluid volumes, she was on an oscillator, and she had IV lines running into her head, hands, you name it.

After her surgery was complete, her surgeon told us that she had lost over 60% of her bowel, and that the rest was suspect. Most of her intestines were liquid, and he wasn’t sure that he had done enough to stop the infection. We’d have to wait six weeks for her to have her second surgery.

They tried to reestablish feeds between surgeries, but her ostomy was so high that she began dumping at just 2 ml per hour on continuous feeds, so they completely stopped.

At the time of her reattachment, the surgeon was forced to remove additional damaged bowel. All total, Julia was left with 48 centimeters of small intestine (vs. 250 in a ‘normal’ child), and half of her colon. She had extensive structuring and required seven separate areas of re-sectioning. Against all odds, she recovered very well from her surgery without significant infection or respiratory setbacks outside of a few days on the ventilator after surgery.

Tomorrow, we will finally take her home! She will be 15 weeks old, and while she is not on full feeds, she is taking about half of her feeds by mouth/ng tube, and will slowly work up at home. We feed her Elecare as she is better able to absorb that than my breast milk. While we are nervous about having a PICC line at home, we are thrilled to finally have our little girl home with our family! It’s a long, scary road, and it’s so hard to say what is the defining factor in why some babies make it and some babies don’t, but I count my blessings every single day and say a little prayer for the families that have lost their little angels.

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