Finn Love 11/01/10
He was born 9 weeks early because BV. HE was 3.8 lbs. Scored 9 Apgar. HE breathed with a cpap for 3 days only. He developed a bloated belly & green bile on 11/4. He was still active. He had not feed yet. They thought it was a mal rotation he was transfered to another hospital. They tested and retested never diagonsed the issue but the belly went down and they feed him. First the nurse feed him formula even though I had tons of breast milk in the fridge. We noticed she was doing it and she just said she didn’t know we had breast milk. Isn’t she suppose ti check??!! He stared doing better & gaining weight and the transferred him back to original hospital. He did well for 3 days before getting really sick. We noticed he looked really bad the day before with dark circles under his eyes but they told us it was nothing.
When he got sick again they told it was a blockage in the intestine or NEC but it would clear up with antibioctics. The transferred him again but it toke 8 hours for them to pick him up. 8 hours!! With no treatment. Both doctors had told each hour counts with NEC. He got no treatment for 8 hours. We called 4 times wondering where they where. No one should wait 8 hours for a transfer let only a baby!
We started to get treatment at the new hospital but nothing worked. It took 5 days for him to die. He got surgery but nothing worked.
We are not pleased with the nurse or the transfer. Or the first non-diagonses. Don’t know if he never drink formula or if he had be treated in those lost 8 hours that he would be here but it really upsets my husband and I. Wish we knew more so maybe he wouldn’t have been feed so soon after have a issue in his belly. They say it leads to NEC if the baby had another issue in his belly. Also maybe it was NEC even though he hadn’t been feed yet. He had many other sign.
Thank you for letting my share and other
Alicia Love

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This is a wonderful website for sharing information. I came on here to see if there were any stories or resources for NEC information on ongoing problems but found wonderful stories from amazing people. I had twins in 1993 that were born at 32 weeks, Kevin and Kyle. Days after being born we were told Kevin had NEC and was being transferred to another hospital across town. I knew nothing about NEC, only that the doctors told us not to expect Kevin to make it through the night. My mother had come down from Idaho where she had very recently married the love of her life, John.

After spending hours scared to death, my mother went to my house to change clothes but on the road trip there she called to tell me her new husband John had just had a heart attack and died. It was not the best day in our lives to say the least.

Kevin thankfully got better and was able to come home about a month later. He and Kyle are now 17 years old. They are the smartest, loving, happiest boys you could ever met. I am worried about Kevin lately though – he is having bad intestinal problems with constipation issues. Our gastro doctors are just telling us to put more fiber in his diet but I think this is more.

When Kevin first started getting better back when he had NEC the doctors told us it would be possible he could have scar tissue when he gets older and this may cause issues. The more I push the issue with the doctors the more they ignore it and blow it off as an infant disorder that has nothing to do with him at 17.

Any info with ongoing issues from NEC would be helpful. I am so sorry for the lose of babies on this site. It was a horrible experience 17 years ago and I could not imagine life without Kevin today.

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Hi I am a Danish woman living in Copenhagen.
I lost my firstborn Ilja to NEC just a month ago. He was born in week 26 + 1 and his weight was almost 1 kg. He got sick with NEC when he was 2 days old and he had to have an operation. They removed about 7 centimeters of his small intestine. He had an temporary ileostomi that was operated back when he was about a month old. After that he thrived, had stools the “normal” way, got bigger, was able to breastfeed a little, could breath without CPAP. But when he was 2 month old and his weight was 1800 grams he got sick with NEC again and died within a couple of hours. Neither I, my husband or the NICU-staff saw it coming, his whole intestine was affected and there was nothing to do.
I miss him very much and think of him all the time.

Love Alexandra

(I am sorry if my English is not perfect)

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Atticus Bryce was born on January 16th, 2011, at 24 wks and 4 days gestatation. When he developed signs of NEC, he was 3 weeks old. He had residual from his last feeding. His xrays became cloudy, his kidney function slowed and his Potassium levels were near lethal. Two days later, he had made a dramatic recovery. His belly was pink, his kidneys had upgraded to Renal Failure – Low Output, he was keeping up his blood pressure. His xrays had cleared and though the gas patterns in his belly were not normal, it was no longer sausage shaped and was showing the air bubbles we hoped to see. They pointed out what they thought was an abcess and felt like he could handle surgery to remove it so that he would continue getting better. When they opened him up, they discovered that the NEC had killed his colon entirely and over half of his small intestine. What they thought was an abcess was his bowels liquifying in his little belly. Due to the level of death, they realized he probably had NEC from his first week of life, but he showed no signs for weeks. He pooped, he urinated, he digested food with no residual for a week.
We let our little boy go on Tuesday, February 15, 2011. He was 30 days old. We miss him so, so terribly and will keep him in our hearts forever.

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The Pregnacy was my first. Wondeful!The baby was growing good.My mid-wife said she was going to be a BIG baby 8-9lbs. It was 36 weeks into the pregnancy, my water broke so the induction began. The midwife says “your to early to have it here, you need to be transfered to a high risk hospital.” My princess comes out 3lbs 14oz. I’m so in surprise. She was taken and rushed to the nicu. It is a confusing situation, what should one do? The next day I was able to go see her. I went into the hospital in joys to be able to hold my baby. Upon my arrivial the nurse showed me my baby. She was red and swollen all over.As I asked questions it was told to me that surgery was preformed at 9 o’clock after having her at 6:54 pm. It was a total shock to me.While in the nicu the nurses discovered she had a heart condition that would need surgery to correct at 1 year of age. The surgery was done at 9 months. one month later she devoloped N.E.C. The scariest thing in my life. The cardialogist started her feeds the next day. Within 5 hours after her feed started she could not tolerate them. The doctor did the waiting scale. With no luck. The blood started shortly after then came the vomiting followed by cardiac arrest. IT is and was the most horrifing thing I’ve ever seen. Now 6 years later my daughter still has a feeding tube from the nec but I will forever be grateful to her beings. GOD has blessed my daughter. Good luck to anyone in this situation

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