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

Baby Addisyn’s Story

February 24th, 2013 by Amber

My daughter was born on November 2nd, 2012 at 28 weeks due to incompetent cervix and failed cerclage. The cerclage failed due to Complete Placenta Previa and the doctor was unable to put the stitches in high and tight enough. She was born at 2lbs 4 oz and 15 inches long. Within 24 hours of being born we found out that she suffered from TAPVR a congenital heart defect. She was transferred to the children’s hospital and within 48 hours of being born she underwent a miracle surgery where she had 2 stints placed in her heart. She was doing much better after her surgery. I strictly breast fed her, but she had to use a feeding tube. 2 weeks before she passed, she had to undergo another surgery because one of her stints was fractured and blood was clotting around it. At that point, my husband and I decided to look into hospitals that specialized in heart defects. We found a doctor that had did the corrective surgery and had her transferred. Before she was transferred the hospital said that she had been spitting up quite a bit after her feedings and they thought it was acid reflux because they had increased her feedings. Once she was transferred, they noticed she was still spitting up after her feedings. I stayed the night with her and the next day while I was doing Kangaroo care with her, I noticed she just wasn’t acting like her feisty normal self. While I was holding her, she started vomiting yellow green stuff. The nurse made me put her back in her isolate and they ordered her feedings to stop and did an x-ray. They found air inside her stomach on the x-ray. They ordered surgeons to go in and look at her bowels. My husband and I sat in the waiting room for the 3rd time praying for our daughter to recover from another surgery. This time didn’t have the same outcome of the others. The doctors called me and my husband into a private room and let us know that they could not save any of her bowels and it had spread to quickly. With her heart condition and her bowels, they said she would not survive the night. My husband and I held our daughter while she passed into heaven on December 15th.

I have been having a lot of trouble coping with the loss of our little girl. I can’t understand how nobody could of noticed this sooner and why they didn’t stop her feedings when they seen she wasn’t tolerating it. I have been contemplating on getting her medical records from both hospitals, but we declined the autopsy when she passed. I’m not sure if I’m going to be able to find out anything. The hospitals did tons of x-rays and tests and never seen this?! They also had ultrasounds done on her stomach for a blood clot as well. I’m not sure where to go or what to do from here. I feel like as a mother I failed to protect her and keep her safe.

Baby Malorie’s Story

February 18th, 2013 by Shannon

Our difficult journey began early morning, 12:30am on January 27th 2013. I woke my husband up having contractions. I was very alarmed because I was only 29 weeks pregnant. After waiting about an hour I called Labor and Delivery and they told me to come in. I was admitted immediately. My contractions were 3 minutes apart so I was given magnesium for 2 days to try and get the contractions to stop. I began bleeding and after 2 steroid shots and 48 hours later I was dilated 4cm and I had an emergency c-section at 10:26am January 29th. My beautiful baby Malorie was born weighing 3lbs 1oz. She started out so well! After the second day she no longer needed the breathing tube and after the third day she no longer needed oxygen. She was handling her feedings of breast milk very well. The following Thursday when I went to go see her I immediately noticed that her color was different. I told the doctor my concerns because everyday she was bright pink and that morning she was a pale color. The doctor had told me that her picc line had gone bad and traveled up her arm and caused swelling. I was told her picc line needed to be removed and they put an I.V. in her scalp. When I held her that afternoon she was very responsive. She kept picking up her head as I talked to her and sang to her. She was so strong. The doctor assured me that there was not an infection but they were going to start antibiotics to be on the safe side. I held my daughter about an hour or so then I left the hospital to go pick up my son from school. At 5:00pm my husband and I called to check on her and they had said they finally got the entire picc line out because it had got stuck earlier. They had said she was stable and doing fine. At 9:00pm my husband and I called and we talked to the NICU nurse. She proceeded to tell us that Malorie was looking very sick and they were going to stop her feedings. They were concerned about an infection. At 11:00pm the doctor called us and told us he was transporting her to Los Angeles for surgery. This was the first time NEC was mentioned to us. It was not even discussed prior to this. We had no idea what we were dealing with. We were still only told she was displaying some signs of NEC. It took the Children’s Hospital Transport team 45 min to stabilize her enough for transport. She made it to L.A. stable but it took the surgeon 4 hours to show up and by that time she had coded several times and she was passing away. The surgeon arrived and told us she was probably not going to survive the surgery but he could do it anyway if we wanted. The hospital was so cold and uncaring, my husband and I were terrified and the doctors treated us like another number. We told them to do whatever needed to be done to save our baby girl. They operated and removed her entire colon and 80% of her lower intestine. When we were told that she wasn’t going to survive my husband and I ran into the room and kissed her, told her that we loved her and then she was gone. Within 12 hours our lives completely changed. We went from having a strong baby girl to saying goodbye to our baby in half a day. I wish I would have known about NEC before this story began. I felt so uninformed of what was going on and before I knew it, it was over. Our angel baby lived for 10 days. Every day is a struggle without having the understanding of why a child would fight so hard to come into this world to be taken away by nec in 10 days. I hope my story will help other parents see that they are not alone.

Baby Bentley Kole’s Story

February 18th, 2013 by Heather

I had my son Bentley Kole October 12,2012 at 11:44 am he was born by c-section because he was breeched he was born feet first! He weighted 2 pounds 9.4 ounces and 15 1/2 inches long i heard him cry and i just cried because he was here i had pre-eclampsia and his heart rate was dropping so they had to deliver him at 32 weeks and 3 days it seemed like days before i got to see my little prince after 24 hours of not seeing Bentley the time came for me to finally meet my little prince he was doing so good they upped his feeding everyday it seemed like and he had lost weighted but that’s normal they said finally the first day i got to see my little man i got to do kangaroo care i was so happy i almost cried he was gaining his weight back! i got the call at 4 in the morning of October 21,2012 to come to the hospital Bentley is sick he has something called NEC i get there and he is hooked up to all kinds of things oxygen,suctioning tube, they had to give him dopamine to keep his blood pressure stable enough to get him to TC.Thompson it took them hours for them to get to him to transfer him to the children’s hospital and when i got there they were nothing they could do he was in shock from the ride and i fell out i couldn’t be losing half of my world he took his last breath in my arms and that’s when my whole world was changed forever losing Bentley has made me a different person i don’t like the new normal he is on my mind 24/7 i go through my head with what if i did this and what if i did that he would be here with me and it wouldn’t hurt so bad MOMMY LOVES YOU BENTLEY KOLE i wished they would have sent him to a children’s hospital when he was born and why did they check him for that if it was a possibility premature babies get NEC especially if he stopped growing and was measuring at 28/29 weeks and i was 32 weeks and 3 days

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Baby Riley’s Survival Story

January 24th, 2013 by Lindsey Souza

I find it incredibly difficult to write the story of my child’s life, but I will do my best.

At 28 weeks, I had a partial placental abruption, which put me into preterm labor, and was put on bed rest (some at the hospital, some at home). I had gestational diabetes that had roared out of control as well. It was decided that IF I could make it, they would deliver my son at 37 weeks exactly. The labor stopped and I made it to 37 weeks.

On October 1, 2008, my son Riley entered the world by c-section,weighing 6lbs 9oz, and considered full term. He was put in the NICU for transient tachypnea of the newborn (breathing too fast),which was expected to resolve quickly. On October 4, at 4am, his doctor appeared in the doorway to my room and told me I needed to get down to the NICU right away. My husband and I rushed down there, where we were told that Riley had developed NEC and e-coli sepsis and that he would be life flight to Duke University Medical Center shortly. He was now incubated.

Once at Duke, he became extremely critical, so much so that surgeons could not even attempt to operate on him, until October 10. At that point, he had become sick, it was a “operate and he may die, don’t operate and he WILL die” situation. During this surgery, he was given a j-juenostomy , for the next 6 weeks. The surgeon said his entire small and large intestine looked sick and he didn’t want to risk removing some that may possibly heal. He was on total tpn/lipids for this time. He contracted sepsis again during this waiting period and was critical off and on.

His next surgery, in November of 2008, reconnected his j-juenostomy,and left him with an ileostomy, and the loss of a great deal of his small intestine and his entire right colon, including his appendix and ileocecal valve. It was decided to let him feed and grow (and hopefully go home) with this ileostomy and operate again when he was bigger/healthier. Two weeks after this surgery, his belly blew up like a balloon and eventually erupted out of his incision line…he had developed a fistula, and all we could do was wait and hope he could ride out the resulting infection. He did and finally, on January 15, 2009, after 107 days, he went home with us.

We returned to Duke in September 2009 to reconnect his ileostomy. The surgeon could find no evidence of the fistula ! He reconnected him, and things looked great. The day we were scheduled to go home, the surgeon decided to do a CT scan on his belly, just to be precautious, as my son had run a low grade fever since his surgery 2 weeks prior. The CT scan showed that the connection made to reconnect his ileostomy had leaked, and he was pouring a small amount of stool into his abdominal cavity. Off they took him to an emergency surgery, where he ended up with an ileostomy again.

In February of 2010, we returned AGAIN to Duke, to attempt ileostomy reconnection. His surgery was on February 10, and he was discharged HOME on February 14 fully reconnected.

We almost lost him so many times and he was so sick, and didn’t fit the “typical” NEC baby case scenario since he was born full term, and being full term with NEC is actually a worse case scenario. But now, he is now a healthy, happy 4 year old with a very scarred up belly. He is medically considered short-gut, but has very few intolerances, most of them being sweets. Because of the loss of the entire right colon, he rides a fine line between diarrhea and constipation, and takes miralax powder daily to regulate him. He started playing T-ball this past fall, and if you didn’t know him and his history, you would never guess he had such a rough go at life his first 15 months!

Mustafa, a Survivor shares her story

January 24th, 2013 by Mustafa Hussain

Hi, my name is Mustafa. I am a 21 year old and I was born prematurely and had NEC surgery. My story is not as exciting i guess as may some other people’s, but its epic for my mother who had to go through with the before and after. I was searching sites to see other survivors of NEC. I am curious to see if they have similar post-surgical side effects of NEC, for example small bowel syndrome or diarrhea like bowels on a normal basis.