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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.

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Baby twins Tobi and Fore’s Survival Story

April 22nd, 2013 by Ata

Tobi & Fore – NEC Survivors

Hello everyone, last night for some reason, I started to think about my pregnancy/birthing experience and stumbled upon this website. After reading so many stories, I just feel very blessed and wholly thankful to have our twin boys who are now 3.5 years old, hale and hearty.

I found out I was pregnant in February 2009 and was completely ecstatic. In my forceful bid to get a scan (I was told I couldn’t get a scan until I was 16 weeks at my regular OBGYN), I was sent to a specialist and that’s where I found out we were having Monochorionic-Monozygotic twins. I was also told their survival rate was 50% and even if they did, they would have all sorts of complications. I was in utter shock for two reasons, 1) we were expecting twins 2) what did being pregnant with Mo-Mo twins mean?
At this point, I left the Dr’s office and was on the phone with my husband (who was out of the country at the time) and family to let them know what I had just been told. The next day, I was on my computer doing some heavy research on what hospital I would have to work with to ensure my babies were delivered safely. I think my actions coupled with God’s divine intervention had a lot to do with how everything worked out.

After being in the hospital (Emory Midtown) on mandatory bed rest for 2 weeks, Tobi and Fore were born via c-section at 34 weeks on August 25, 2009 weighing 4lbs 1oz. They were in the NICU for 4 days and we were then told Fore was extremely sick and needed to be put on antibiotics. The doctors and nurses were pre-emptive and also started Tobi on antibiotics as a precaution. True enough, Tobi followed suit 2 days later and became extremely ill. After watching out for symptoms and a few tests, we were told they had both developed a case of NEC. NEC, what is that?

It was pretty scary period for us as they stopped feeding completely, put them on IV’s, picc lines, constant x-rays, blood transfusions, etc. We would painfully watch the monitors as their heart rates were all over the place, were told it would be best not to hold them the first few weeks because they were in so much pain, saw the boys constantly being irritated by the tubes in their mouths and noses. I could go on and on, it was just horrible. After about 40 days in the NICU without surgery, (they responded well to treatment) we were able to take the boys home.

After being home for about 2 weeks, Tobi was not his boisterous self, was pretty weak, not eating and I noticed he seemed constipated. He finally had a BM the next morning but I wanted to take him to see his Pediatrician just to be sure. As Dr. Simon checked out his diaper, he noticed bloody stool and immediately called Scottish Rite Hospital to let them know we would be there immediately. Apparently, he feared a re-occurrence of NEC had occurred with Tobi and immediate attention was needed.

We were offered an ambulance but I opted to drive. I am not quite sure how I gathered the courage and strength to drive, as I was pretty confused and scared. Luckily, my mother-in-law was with me. How could NEC re-occur? We were told a chance of this happening was rare.

I spent the night with Tobi in the hospital that day after Doctors confirmed that he indeed had a re occurrence of NEC. My goodness, I thought; NOT AGAIN. Tobi cried his heart out the whole month and half he spent back at the hospital. It was always too much for me to bear so I had my mother and mother-in-law spend more time with him at the hospital. Luckily, after primary treatment, he responded very well and didn’t have to go through surgery after all like the doctors had indicated.

I usually do not put up any comments or posts but I had to for this as I experienced it first hand and want to give a glimmer of HOPE to parents out there with children who have NEC. Be steadfast, faithful and prayerful. Best wishes to you and your little angels.

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A Story of Motherhood and Survival – A mother talks about her fight and how her baby helped her..

March 31st, 2013 by Heather

Talking to my seven-year-old daughter about my cancer often gets people to laugh. She claims that she is the hero saying, “I saved my mommy’s life.” It couldn’t be more true. However, people just don’t believe it, but how could they? It’s not every day that a child saves an adult’s life. There’s a lot of truth to what she says because she was my bright spot when I had cancer. She was the thing that got me through, and that’s why people should believe that it’s possible for kids to help you through the roughest challenges.

My husband and I waited seven years to have a baby. We didn’t think about having kids until later because we wanted to be ready. I was finally ready to go for it. It was really strange to be pregnant but also a wonderful kind of strange. I got to eat some really silly things, and I had all kinds of questions about what I needed to do as a new mommy. I kept wondering what I was going to be like. I wanted to be a cool mom, but I eventually decided that I needed to just be a good mom to my little baby. The excitement in me was so unbelievable for this baby that when she finally arrived. I wasn’t expecting a difficult delivery.

Lily was a breech baby, so I had to have a C-section. It was so emotional but I got through it and held her in my arms for the first time. I knew then that I was going to be the best mom that I could possibly be for any baby. Just looking at her made me realize what I had been waiting to do all my life. At first, I couldn’t let go of her. She was so perfect. I felt immediately at peace with everything and just grateful. Pretty soon, things were going to take a new turn.

About three and a half months after her birth, I wasn’t feeling so hot. Every day I was exhausted, and I was losing tons of weight. We did some tests to see what was going on and three days before Thanksgiving, I was sitting in the doctor’s office with my husband Cameron to finally hear the results. It turned out that I had malignant pleural mesothelioma. It was shocking, and then the next thing shocked me again. I only had 15 months to live without aggressive treatment. I couldn’t speak. I couldn’t even begin to understand how this was happening to me after I had just went through the best experience of my life and had planned to spend an eternity making Lily’s life absolutely wonderful. It was just a horrible feeling. Thankfully my husband was there and helped to figure out the treatment options. I needed to have major surgery. I was going to lose one of my lungs.

I went in for an extrapleural pneumonectomy surgery on February 2, 2006. It was a long procedure that removed one of my lungs, part of my heart lining, chest lining and parts of diaphragm. I was in the hospital for 18 days and after another 2 months of recovery I began chemotherapy and radiation treatment. I had to make sacrifices during this time. I couldn’t always be around my husband or Lily. She was the bright spot for me. She was what kept me going through the dark times where I didn’t want to think about what was going on inside of my body. I’ll never forget how hard it was and how badly I wanted to be there for her as a mother.

When I think back to that time, the moments of overwhelming anxiety and pain, I realize how lucky I am. Mesothelioma is a deadly cancer that usually takes 95 percent of those diagnosed. Being a mother was the reason that I was able to keep going despite all the odds. My baby girl needed me for so many more years, and I wasn’t going to give up fighting. My husband Cameron was also there for me when the road was rough. He was the ultimate caregiver and a passionate husband who just never stopped being the rock that we needed to push through. My family and friends really helped throughout this time. People we didn’t even know offered a kind word and some sense of direction when it almost became too much to bear. I will never forget that kindness and thank all those who reached out to us. Still, my little girl was the thing that kept me pushing through the challenges. That was what helped me to be strong through all of the treatment. So when she tells people that she saved my life, I know exactly what shes talking about.

 

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Baby Kyrans’ Story

March 31st, 2013 by Baby Kyran

On 11/24/2012 my son Kyran was born at 30 weeks. He was so precious to me and I was so relieved to see that he was doing so well and breathing on his own. He was born weighing 1lb 13oz and measuring almost 13 inches. The doctors told me that he was small for his gestational age, but when he was admitted to the NICU he was doing so well. Each day in the NICU was always positive news. He had no major problems, but on 12/19/2012 that all changed. We went up to the hospital to see him and the first thing I noticed was that he looked so bloated. The nurse informed me that they had held his feeding and he was awaiting an xray. We waited and after the doctor reviewed the xray, she notified us that he had a disease known as NEC. I had never even heard of this before. The doctor discussed with me the plan of action,and everything was put into place, but by that night she told me that he would not make it through the night.In just 8 hours his condition had progressed so fast that stopping it was almost impossible. My little angel had so many machines hooked up to him at this point, and he didnt even look like the baby I had given birth to. He made it through the first and second night and even had the surgery to relieve the pressure in the abdomen and drain out the excess infection, but on 12/21/2012 he passed away from complications from NEC. I was devestated, heartbroken, angry, everything you can pretty much imagine. Everything had looked so positive, all he had to do was gain weight. I wish that the doctors had informed me of the possibility of him getting this disease beforehand. After learning of the symptoms of the disease, I noticed that at some point or another he demonstrated atleast 3 of the symptoms, but I never would have thought it was more than a little vomiting and diarhea associated with being a normal newborn. I wish I had known more because it would have made me alot more cautious about his care. All along they knew it was a possibility and they never even mentioned it. Like other mothers sharing their stories I have some reservations about the level of care given to my son. The mother in me tells me that there is something else that could have been done. It breaks my heart everyday to think that this horrible disease took the life of my son, my precious little baby. I am torn as to whether or not I should ask for his medical records, because I also declined the autopsy. Everyday I think about my baby and what it would be like if he were still here. He is greatly missed and he is loved very very much.

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Twins – Baby Lanes’ Survival Story and Baby Bennett’s Story.

March 31st, 2013 by Lindsay

On January 18th 2013 I went into labor with my twins…at 25 weeks. My twins suffered from twin to twin transfusion syndrome and I underwent laser surgery at 17 weeks to correct the problem. The procedure worked and my twins thrived afterward. The procedure did put me at risk pre term labor, but I never expected this. They started magnesium, but it didn’t even touch me and within a few hours my babies were delivered by emergency c-section. Lane Joshua weighed 1lb 5oz and Bennett James weighed 1lb 4oz.

Lane struggled with breathing and other issues the first few weeks. I was just looking at the notes I would write when talking with the NICU nurses. Next to Lane’s name I would have a paragraph of issues. Then there was Bennett, in every entry, doing great, no problems. He was our strong twin and smooth sailed through the first few weeks. On Saturday, Feb 10th I arrived at the hospital to find my usually very active Bennett very lethargic. Though he had a breathing tube , and I couldn’t hear his cries, I could see on his face he was crying. The nurse told me he had vomited some green stuff and they were stopping his breast milk feelings. They got an abdominal X-ray and started him on antibiotics. Bennett was sick, but he didn’t show the major signs of NEC. Our doctor did talk about the possibility that is what he had, but he did not believe it to be a serious case. There was no air in the abdomen, his vitals were good, could have been extubated if he wasn’t fighting an infection. No need for surgery at this point, they were going to watch him and see if the antibiotics took care of it.

On Friday, Feb 15th, Bennett had not shown signs of improvement and his belly was looking much more distended. Our Doctor recommended airlifting him to Minneapolis to be evaluated by a pediatric surgeon. Absolutely let’s do it. Let’s get this problem taken care of so I can have my baby back. My husband and I arrived to the hospital on Saturday morning. The surgeon spoke with us and explained that his team was split half and half on whether to take Bennett to the OR. He just wasn’t showing major signs of enough distress. There was still no air in the abdomen so they though he may have a small bowel obstruction or stricture. He did mention that worse case scenario would Bethany its NEC and there could be a large portion of dead bowel, “but I’m not expecting that”. On Saturday night they finally decided to do surgery.

When the surgeon and the neonatologist came in the room I knew it wasn’t good. The surgeon explained to us that Bennett’s entire small intestine was necrotic and needed to be removed. My husband and I are both in the medical field and knew what that meant. The mom in me though was waiting for them to tell me some miracle procedure they could perform to help my son. What’s next I asked? We recommend you withdraw support. It was the most awful words I have heard in my life. How does a parent do that? Early Sunday morning Bennett passed while he was laying on my chest. He was 4 weeks old. I’m angry I had to go through this. I’m angry I had to make the decision to remove support. I’m angry my son had a horrible case of NEC and did not present more symptoms. I’m angry that I no longer have my son and his identical twin no longer has his brother. It’s an awful thing and I wish I had more answers. What caused it, how long did he have it, what if they would have gone in earlier? I am glad I found this website though, and sympathize with other parents who have had similar experiences.

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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.

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BabieswithNEC.com was created by Elaine and Chris Jones as a support network for other parents, after losing their daughter, Caitlyn Grace Jones, to NEC in 2006.

You may contact us at contact@babieswithnec.com