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The purpose of this site: A Support Network for Parents

June 28th, 2011 by Elaine and Chris Jones

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.

pic-caitlynCaitlyn 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.


June 1st, 2016 by Marly Agui

It was 2010 when I got pregnant under the worst conditions. The father of the baby chose to be with other women and not really worry about me or the baby, and I had a lot of problems of my own. Still I hid my pregnancy from my family and took the best care of myself that I could considering I had to work 10-12 hours a day. I knew the my pregnancy was delicate but working was a must. I felt the baby grow shed kick and move around she was really active. Only when I would eat she would stay still. I was so In love w her and her father. Who ironically is now my current spouse. But when I was 7 months pregos I found her daddy with the other women. I couldn’t control the deep hearted pain I felt. At that moment I began to leak green fluid. (Preeclampsia) I left the seen and let the love birds stay together. That day I drove myself to the hospital, with in 10 mins I was getting a C section done. The baby had an elevated heart beat too elevated for her little body. when she came out I couldn’t hear her crying I yelled at the doctors to tell me if she was alive. They said she was but they did not think she would make it as she was having small heart attacks. I kissed her little face as they rushed her away. The next morning I woke up alone cold and empty I begged the nurses to take me to her but they said because of the preeclampsia I needed to be in bed and monitored for 2 days. She too was fighting for her life so they couldn’t bring her to me. On the 3rd day I got up and walked to the Nic U ward. And there she laid alone in her incubator. They took her out for 20 minutes I held her in a rocking chair she starred at me I starred at her she then mustered all her strength wrapped her little hand around my pinky finger and she held it for what seemed to me like a life time. I wanted to stay in that moment forever. Till now 6 years later I’ve held on to that moment for dear life. soon after they took her away again. Few hours later they ran up to my room to tell me that her heart gave out. She lost the fight after she saw me. I think she waited to say good bye to me. Atleast that’s what I’ve told myself in order to survive. I blame myself I blame her father and the women he was with who knew that I was pregnant. But as of this very day I vow to begin healing I don’t want to break everytime I think of her. I want to remember her with happiness. I see I have a long road a head of me. Reading all these blogs has shown me that I’m not alone.. There are others who have endured just as much as I. I wonder every day of I’ll ever see her again, and if I do will she know I’m her mommy.


June 1st, 2016 by megan

This is my story on NEC and my baby Mikel Angelo

April 6, 2016 23 weeks pregnant I went into Mercy medical hospital because I started to spot bleed, they ran test and told me I had a urinary track infection and sent me home with antibiotics.. As the night went on I started to bleed more heavily so I went back to the hospital were they admitted me and ran test. Later that night I was told that everything was OK and sometimes pregnant woman bleed with no properable cause. So I went home, but something inside didn’t feel right..later on that night I went to work as normal, while at work I felt pain like labor pain I timed my contractions and they were 3 mins apart I knew this because of previous pregnancies. I knew in my heart something was wrong, with the pain almost unbearably I asked a coworker to drive me to the hospital.. There I was admitted and hooked up to heartbeat monitor, the doctors did more test and couldn’t figure out why I was bleeding.. And now having contractions.. April 8, 2016 my water broke while I was at the hospital, the nurses were so upset they knew I was only 24 weeks pregnant and chances of survival were slim. As I waited crying my eyes out my boyfriend came to my bedside and told me everything was going to be fine..I was so scared I didn’t know what to expect… The doctor came in several hours later and asked me if I choose to have him personaly remove my son from my belly to abort him.. I was shocked he asked me this..he told me that a 24 week old baby was just to tiny and surviving chances were very low..and he can possible have mental problems. I told the doctor I wanted to save my son and I believed in him..so the doctor told me that he would call another hospital who specialized in preemies to have me transferred out..I agreed!! Later that morning a team of paramedics came and transfered me to st. agnus! My boyfriend followed, and arrived minutes later I felt safe there. A team of specialist came in my room and told me they wanted to keep me pregnant as long as possible and they were going to do whatever it takes to keep my son in my stomach.. They also wanted to find out why I was bleeding so much..they did a number of test and ultersonds and they finally figured it out!! My plecenta was detracting itself from my utrine wall and that it was pretty serious..if my sons lifeline gets cut off that can mean still born for him. They monitored me for 6 whole days until it was time. He was ready to come out.. I was rushed for emergency c-section and put under.!!! April 13, 2016 my son was born at 1 pound and 10 ounces and was doing well !! I couldn’t believe he made it through all of this… I was overwhelmed but couldn’t see him until I was stable and was wheeled down to the nicu … When I looked in the incubator I started to cry… He was so tiny but he was such a fighter I could tell right away he was going to get through this no dought!! 3 days later st. Agnus told me they had to transfer him to children’s hospital were he would be better off there with a team of specialist who deal with preemies and who have a excellent name…at the time I was nervous but I had no choice.. He was transferred and I was discharged.. Mikels new home was the nicu in Vallys children hospital.. He was doing so well that the doctors where applauding his excellents.. We were so proud of our baby..test results were always normal I was pumping milk for him.. Everything was looking good for Mikel until his feeds kept going up more than I can pump and milk supply was running out.. I was very upset…but having 2 kids an hour away and working an hour away from Mikel was so much stress on myself that I had to choose to put him on donor breast milk.. I disappointed myself and Mikel..but the nursers informed me that donor breast milk was so much better and it would help mikel.. So I consent to donor breast milk..he was doing well on donor milk and tolerating his feeds well.. He had good pee/ poop diapers and everything was perfect…until the hospital ran out of breast donor milk and put Mikel on formula at 29 weeks (gestional) I was NEVER INFORMED OF THIS!!! Later on me and my boyfriend(babys dad) went to go see Mikel after long day at work we arrived around 11pm may 22 2016 and Mikel didn’t seem his self he seemed to be in pain! I asked the nurse working that shift and he told me it was normal for him to have a little upset tummy.. And that’s when I looked at the feeding Mikel was hooked up to and asked him what was my baby being fed..and he looked at me and told me that the donor breast milk bank ran out of donor milk and they gave Mikel formula !! I was shocked and asked why?? He said well what else where they suppose to feed him!! I thought to myself that is weird and I ended up trusting them. as we held Mikel he cried in pain and discomfort I kept telling the nurse and he promised me that Mikel was fine I could tell my baby was in pain and he was trying to poop but he just couldn’t we were trying to help Mikel by putting his legs up and rubing his belly hoping we can ease the discomfort he was having but nothing seemed to make him feel better we gave baby mikel back to the nurse so he can but him to bed. He placed Mikel on his belly and told us that it would help him if he got placed on his belly So we kissed him and said goodnite..That early morning they called me and told me that Mikel became very ill and that I should come to the hospital right away! I started crying right away and asked the doctor how did Mikel become sick? He told me Mikel developed NEC over night! I thought to my self how can this be ? He was perfectly fine! I don’t understand! The doctor told me to come down to the hospital so he can show me pictures and explain.. So I arrived mins later..they took me in a private room and sat me down. They told me my baby became very sick and he had a very slim chance of surviving! I couldn’t believe what he was telling me I didn’t want to believe this nightmare I jus wanted to wake up… The doctor told me Mikel has a very serve case of NEC and his belly was so swollen and it kept getting bigger !! Everything was happing so fast I didn’t have a chance to digest everything.. I wanted to see my son fast…as I approached his bed I looked at him and his belly was so big and he was hooked up to oxygen..which he never required!! And he was being poked every where with 7 different nurses surrounding him.. I just couldn’t understand my son was doing so well and no problems at all weighing 2pounds 10 ounces he figured this preemie thing out… I was so overwhelmed with everything I couldn’t stay in the room any longer I left and called my family.. They rushed down to the hospital to see Mikel..every body was shocked as well we needed to know how he caught this NEC … After they left I was told by the doctors that surgery couldn’t be perform at this time it was basically to late and he was dying I couldn’t jus let my son die.. The doctors kept asking us if we wanting them to keep resesitating him..because he was going to become brain damaged if he kept being resitated finally Mikel played to rest on may 23, 2016 that morning I felt a piece of my soul being took from me. My angel who fought all his might to live just died!! I never got to understand why did they give my son formula without my knowledge… Was this negligence? I need to know ? This doctors that me and my boyfriend had to deal with had no type of remorse what so ever.. I just want Mikels story to be herd he impacted a lot of people hear on earth..now I feel I need justice for him…something wasn’t right about all of this…I have received his medical report and it clearly says ” baby was switch from donor human milk to formula which caused NEC which caused death ” Please I’m at a lost for words..is there others out there going through or went through this and if so please share thank u…


May 7th, 2016 by edna

When my son was born he was as healthy as any other baby.a week later my world collapsed when i noticed my son was not ok.i took him to the near by hospital and i was told what no parent wants to hear.if i would of waited 30 more minutes and my baby could of died.He was so tiny and already fighting gor his life.he went thru a series of exams tests etc…
He fought for 3 weeks and thank god he won.Know he’s a heathy 7 yr.old big brother


May 7th, 2016 by KC

My son Carter Griffith was born December 2013, 3 1/2 months too soon.

At 2:30 on a Wednesday morning I rolled over in bed and felt a gush! I called out to my husband and said “I think my water broke! … Can that happen!?” I knew it was a stupid question, of course it can happen but it shouldn’t!

I called my OB’s office and was assured that it wasn’t likely that my water broke but to call again in the morning if I still felt like I was leaking fluid. I work at a hospital and so I drove to work the next morning and called my OB again with no change. I was told to go to the childbirth center to be checked out, just to be on the safe side. I was sure my water had broken but I was hopeful. This was my first baby so I was in unfamiliar territory. I was sure there was some simple explanation.

Through my entire experience of that next week I never received bad news but I did receive a lot of ‘not so good news’. Starting with: my water had indeed broken but there was no sign of contractions or dilating. Great! So do I need to go home for the day or am I okay to go back to work? Now I’m truly not a stupid person but I was very naive and very hopeful and no one wanted to give me bad news. I was finally clearly informed that I needed to be transferred to another hospital where I would remain until my due date 3 1/2 months away.

Several hours and phone calls later arrangements were made and my husband and Mom were by my side helping me get settled into my room at the University hospital. Later that evening someone came to take me to ultrasound. I was surprised that she didn’t bring the wheelchair into the room and figured she must have it parked out in the hall. When I didn’t see it in the hall I assumed we must not be going far. It wasn’t far but still I wasn’t exactly sure I was allowed to move around, or if I was I wasn’t sure how much. I didn’t want to be a difficult patient and so I only raised my eyebrow at it… Looking back I should have insisted on being wheeled down to ultrasound.

All the test results were still promising. I would just have to wait out the rest of my pregnancy counting ceiling tiles and singing the song that never ends. I knew every hour he could stay in my womb mattered and I was happy to do it if it meant a strong healthy baby.

Sometime during that first sleepless night my world crumbled just a little bit more; in the small hours of the morning the baby turned and compressed his cord. His heart rate dropped and nurses ran in to put me on oxygen and turn me to one side. His heart rate returned but continued to drop dramatically every 30-45 minutes. With each drop I was informed that he may need to be delivered soon. My husband was at work over an hour away and dropped everything to race there as fast as he could just in case. My Mom did the same but she was only 20 minutes away. I was still optimistic, I had to be or I would have seen this for the crisis it really was, I was sure his heart rate would go up and stay up and we could go on with the pregnancy; it simply had to, I was only 26 weeks pregnant. My Mom arrived and I was told that as soon as the OR was ready they would be taking me for the c-section. I began to shiver.

My son Carter was born that morning. He weighed only 1lb 11oz. He was ventilated, stabilized and taken to the NICU. The rest of the day was a blur. My husband arrived and he and my Mom went to be with Carter. He was beautiful and perfect… just tiny. I got to see pictures but had to wait until I could sit in the wheelchair before I could see him. Finally after what felt like all day I got to go to the NICU and meet my son. I rested my hand gently on him and softly sang a lullaby.

And that’s how our delicate fairy tale went for six days. I spoke to him, sang to him, learned how to change a preemie diaper. He graduated from the ventilator to a c-pap. We got tears of joy when he finally pooped. I held him gently to my bare chest and sang to him some more.

On the sixth day he had been having more and more brady episodes and so they switched out his c-pap to NAVA. Anytime he held his breath for four seconds he would get a puff of oxygen. Still.. it wasn’t bad news.. just not so great news. It was still a great day in the NICU.

Early the next morning we got a call with more not so great news. Carter had even more brady episodes during the night and had to be reintubated. We raced to the NICU to be there in time for rounds… in time for everything to go horribly wrong.

First his blood chemistry was a little off, then his abdominal x-ray looked suspicious. Quickly more tests were ordered along with another x-ray. There was free air in his belly and his blood was becoming acidic indicating dying tissue. He was being prepped for transfer to Seattle Children’s Hospital for surgery and we were told he had a 50/50 chance. All I could think of was my God that’s the flip of a coin!

Family was called, consents and transfer papers were signed, and I was about to ask a question when suddenly I heard the words … CODE BLUE. Someone stood in front of me to block my view as they did chest compressions on my tiny baby. They quickly had him stabilized enough for transfer and we raced to Children’s.

About a dozen nurses and specialists crowded his giant NICU room while my husband and I were allowed to wait off to the side just out of the way. They worked on him for a long time hooking him up to several IV’s and machines. Social workers introduced themselves, waiting, offers of juice and crackers, more forms were signed, and more waiting. Several doctors came to explain what NEC is and what they might be able to do about it. His acidosis was bad and they needed another x-ray. More waiting. The docs looked at a computer screen just out of our view and shook their heads. The docs gathered everyone in a family conference room. Someone had called our pastor who joined us.

Carter had extensive NEC and the acidosis made him unable to clot. Lifesaving surgery was no longer an option at that time. They would insert drains to decompress his belly and if his blood chemistry improves he may become a candidate for surgery. We were finally allowed to see him. He had four IV’s. The ventilator was breathing for him. His arms were limp at his sides. His tiny belly was horribly discolored and blown up tight like a balloon with a drain on each side. I held his little hand, told him everyone was here and that he was doing such a good job of fighting.

They didn’t sugar coat it, this was very bad news. Everything about what they said, how they said it, their body language and facial expressions… Carter wasn’t going to survive this.

While in the family conference room praying with our pastor Carter had to be resuscitated again.

The pastor came back into the room with us and with tears in his eyes he baptized our son. With my husband and I already crowding the bedside the charge nurse quickly gave into our request that other family members be allowed to join us in the room. Everyone took a turn holding his hand and talking to him. I prayed to God that His Will be done and that if it was His Will that Carter should be called to Heaven that it be quick, peaceful, and painless.

Early that evening, not long after our prayers, Carter’s oxygen level went down further and further. Soon his heart rate began to drop too. My husband and mom pulled me aside just as they began his third round of CPR. Knowing our wishes, the doctor told me that it was time to hold him and my husband gave the order to stop.

They placed our son in my arms as family surrounded us. I rocked him and sang the lullaby he had come to know. I thanked him for being our son and told him how proud we are of him. I told him that he did good and that he should go to Jesus now. I sang a few minutes more. The doctor told us that he was gone and then led us in prayer.

Everyone in the room took a turn holding him and saying their goodbyes. I helped the nurse take out all the tubes, I washed his body, and wrapped his body in a clean blanket. We held him for a few minutes more and then handed him to the nurse. We kissed him one last time and said our goodbyes and then forced ourselves to walk out of the room.

Numb with shock we somehow made it home. We slowly survived the first day and then the next…

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May 7th, 2016 by NIA

My daughter Kayla Nicole was born 12/09/2013-my precious baby was 2.4 lbs- she was only given my breastmilk/ Kayla was diagnosed with NEC 12/22-she had to have 2 surgeries-after surgery 2-me and her father were waiting in the waiting area with my other 2 children eating a snack-i was very hopeful, i knew she was a fighter- but the doctor came and gave me the worst possible news anyone in the world could have ever given me ” Im sorry but there’s nothing else we could do, all of it was infected, and she can not survive without her intestnes.” My heart dropped, that day me and my husband stayed by her bedside and we held her until her very last breath. Earlir before the surgery she squeezed my finger and peeked at me consistency, and as she died in our arms that was all i could remember were those gorgeous eyes peeking at her hopeful and faithful mommy-I buried my baby christmas eve- and it felt horrible like a nightmare i never wanted to be in, I wish someone or GOD could have saved my baby, she made me complete, GOD made sure my baby had no possible way she could be with her family, Ive been through denial, hate, grief, sadness, hate again, dont know who to blame, why me, why my baby, why? why? why? I sat in my kitchen some nights and just stared at the wall and cried and asked GOD to send my baby back. but i knew that was impossible, IF GOD blesses me with millions I will most definitely put it into finding a cure or alternative for precious babies with NEC

I love you forever and will see you in Heaven one day
Kayla Nicole Dec 9-Dec 23 2013
From Mommy and Daddy and your 2 big sisters