A support network for Parents
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.
Caitlyn 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.
I am very sorry for your loss me and my wife send our condolenses. We found out today our baby was diagnosed with N.E.C. she was bon on Dec 28. 09 and weighed 3lb 3oz and was 16in long . We named her Cydney Jade-Lorraine Jaramillo.We are hoping for the best and every prayer helps so keep us all in your prayers
on jan 4 we found out our baby girl cydney developed NEC we were so scared for her and what was one day felt like eternity we prayed all day and hoped for the best on jan 5 at 1:11am our little pride and joy went home with the lord she passed away in my mother-in-law’s arms we wish the best for any out there who has a baby with nec our hearts go out to you all
We hope you can help each other. Its really so hard…let us know if we can do anything.
i am so sorry for your loss. we had a planned c-section on 12-17-08 for our baby boy none of us knew how bad things were about to get. My baby Ryan was having trouble breathing as soon as he was born. They took him to NICU they came in and told us he had PPHN he was on a vent.He was able to breathe in but not out and carbon dioxide was sitting in.The next morning he was worse he needed to be lifeflighted to kosairs childrens hospital iin louisville,ky. Ryan was put on ECMO when we arrived,they had to bag him atleast 4 times after we got there. He did great, he came off his machine the swelling was going down and most of all ifinally got to hold my baby!!!! After a few weeks he was still in the NICU and they started to notice there was blood in his poop.He had NEC i had never heard of it before i didn’t know how serious it was. Our baby fought so hard since he had been born and he never gave up! We celebrated his 1st birthday 12-17-09 and i was soooo happy. I was a wreck when he was so ill i cant imagine how hard it must be for yall i am soooo sorry for your loss.My prayers are with you
Im so sorry for your loss, my heart goes out to you. I had twin boys 3/7/08 and was told at 26 weeks that one of my boys wasnt growing and they didint know if he would make it. At 30 weeks after monitering me for a week the booked me in for a C section. Hendrix and Hunter were born 1420g and 900g. Hunter contracted NEC 3weeks later and 4 operations 8 1/2 months in hospital and my husband and i fighting along side Hunter all the way and researching and reading every thing we could after being told he would never come home im happy to say, He will be 2 on the 3rd of July this year,and although it was a long journey and the most heart aching time of my life,his defied all odds. Today he weighs 7.5kg his brother is 10.5 so he is still little but i tell you his attitude and personality makes up for it. To parent with babies with Nec Never give up fight research and ask a million questions
Im so sorry for your loss..noone knows how it feels to lose a child…I had a son named Mekhi Xavier..he was born Sept.26,2009 at only 27 weeks. He was 2.2 lbs and I was so scared. Mekhi was doing geat , taking all of his feedings, then on October18,2009 i got a phone call saying that my little Mekhi was sick, (he was diagnosed with nec )and I should come to the hospital asap. When i got there everything looked wrong, but as time progressed Mekhi began o stabilize and was able to go to surgery. He made it thru surgery but that wasnt good enough because all of his small intestines were dead. My little Mekhi passed away in my arms at 10:24pm on October 22,2009 and that was the worst day of my life…so I am so sorry for your loss
im sorry for your lose i went through the same thing and i have nightmares and cry everynight i was 30 weeks and i ended up going in the hospital for a emergency csection my beautiful daughter was born jan 30 2009 she was 3 lbs 7 ounces and was doing great then all of a sudden on feb 7th the day of my birthday her stomach was very bloated and they sent her off to another hospital they told me she had NEC they went to try and give her surgery but her intestines were already dead so i had to take her off life support and she died in her fathers arms on feb 8th 2009 this is so devasting for every parent who went through this i always think of her and miss her very much and wish she was here. my prayers are with you and your family please email me if you would like i need someone to talk to who went through this because i know nobody who has
I am so sorry for your loss.5 days ago I went through the same thing too. My baby was born April 8,2010 at 29 weeks 2Ib. Everything was fine he breated by himself without machine. I and my husband were so happy.Everyday 2 times I went to hospital to see my son. April 19,2010 they called us”ur son is very very sick we transferred him to another hospital. OMG i dont want to remember that day. They gave him antibiotics 12 hours but didnt work finally, he got surgery after surgery he was gone. I couldnt hold my baby because i couldnt stand up I was fainted .I cannot describe my pain how is it? Sooo painfull everynight every single time cry cryyyyy.Why my baby got NEC why ? I saw little baby like 1Ib she was doing great and her family was ready to go home with little girl.My baby was born 2Ib but he didnt make it. I have a lot of question mark about my baby. I had a earing infection so i used antibiyotic that called Erytromycin maybe that antibiotic killed my baby. I asked dr .Dr told me “no dont blame yourself.” I miss my baby a lot.