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.
my son was born at 26 weeks 1pd 10.9oz. he was doing so good and started feeding on my breast milk through the feeding tube. i was told that he had some pinkish in his stool so the test results showed that it was positive for blood and told me he had the disorder called NEC. He got to the hospital just in time for his surgery… he is still recovering now… Please prey for him.. D’mitri Caine Jackson
We are praying and sending you all strength.
My story is exactaly the same as yours !my daughter Giada was born at 26 weeks and weighed 1lb and 13oz and was 12 1/2in long on march 15 2011 and she was doing great never needed to be intabated….just straight c-pap… she was up on her feedings to about 22cc…i got a phone call on april 26 at 6:00 am to get to the hospital because giada was very ill .. when i arrive she was a pale purple color ..they told me she was diagnosed with NEC….i sat with her all day my husband arrived at the hospital at about 4:00pm after work her little body had swelled twice its size at that time and had become much darker in colorthe hospital told me that they wanted to transfer her to the larger childrens hospital so they could prform surgery on her if needed dut to the lac of special surgens in the current hospital my child was at..we waited for her to stable enough to go …at about 7:00pm we arived at the other hospital about 20 min away…we were told that her condiion had worssened at that she would not make it till morning we sat by her sid and cried our eyes out and told her how much we love her and that she needed to b strong as she lay limp,swolen,and covered in wires and ivs..she was staring at us and raising her brows the whole time…the surgen came and spoke to us at about 9:00am april 27th to tell us what he could do for her and the risk factors along with his procuders…our daughter could not keep her blood preasure stable enough for surgery the surgen informed us that if he were to go throught with surgery she would possibly bleed to death and not make it out of the room and was also positive that her intestine were too far gone to save …. so she would bleed to death just for him to look inside …we were given the choise of surgery and have her pass on an opperating table or in the confort of our arms…we has a moment to decide my husband and i decided that we wanted her pain and suffering to end and that its only right to have her with us not to bleed to death on an operating table … the hospital moved us to a private room at 12in the after noon where we heald our precious angel one last time and said our good byes as she passed away in our arms at 1:15 april 27,2011 …. she will always live within me and my family and never forgotten ….
rest in peace beautiful baby Giada lillyana V.
<3 sarah
Unfortunatly our story is the same…I went into pre-term labor on 2/27/11 and had my daughter @ 7:41 pm via emergency c section Olivia Grace weighed 2 lbs 3 oz. I delivered at Northern Dutchess Hospital in Rhinebeck NY with my regular OB but then Olivia had to be transfered to Vassar Brothers Medical Center in Poughkeepsie bc NDH did not have a NICU…My husband left me to go stay with her at VBMC bc I did not want her to be alone… Olivia was thriving, I was pumping like crazy my breast milk was coming in great and they were feeding her my breast milk primarily…Olivia had a patent ductus arteriosis spell? (PDA) they gave her antibiotics which helped it close…and she needed a blood transfusion, which they gave her with no problems… on 3/25/11 they said she was a little on the anemic side and that she would need another blood transfusion which we were not upset about bc she did well with the last one…when I called to check on her that night they said she had gotten sick, and it appeared that she was getting worse…a few days before this they had started using a milk fortafier not sure what kind and started to not tolerate her feeds as well…anyway Olivia got diagnosed with NEC and they flew her to a level 4 NICU at Albany Med where she started to stabalize and then within a 1/2 hour she got really bad they had to put a drain in her little belly to drain out bile, her color which had always been a beautiful pink had turned to greyish purple…The surgeon who had met with us said she didn’t need the surgury yet but by the time she needed it it was too late, her bowl never preferated but her heart rate started to drop and she was too unstable to do the operation…My husband and I made the decision to take her off of the ventilator bc the doctors said there was really nothing more they could do for her…I couldn’t imagine keeping her on a ventlator for the rest of her life even though I would give anything to hold her one more time…Olivia Grace passed away on 3/26/11 after 28 days of life due to NEC.
I wish there were more research groups out there for this horrible disease, If any of you know of a place where I can send Olivia’s medical records for research purposes please let me know…Has anyone had another child after their baby with NEC? This website has helped my husband and I, we felt very alone during this process bc no one has heard of NEC.
Thank you for creating this page.
Many Blessings
Katie
My precious Madelyn was born at 24 weeks on June 1, 2011. She was 1 lb. 3.8oz and 11 3/4″. She was ready to come off the vent at 3 days but they waited because of the condition of her skin and removing the tape. At a little over a week she come off the vent to cpap and did well until her PDA became worse. She then had to go back on the vent. on June 27 her fortifier was increased to 28cal and 6pm feed and at 1130pm we were called to the hospital and told she was being transferred to the childrens hospital maybe 2 miles down the road in case she needed surgery. We arrived a few minutes before transport and were horrified at what we saw. Our beautiful little girl was so lifeless, gray and swollen. She had to be bagged all the way to the hospital. We met with the surgical team and she didnt have a perforation but was pretty infected. We were told she probably wouldnt make it but they would do everything they could or we could just let her pass. This was my miracle baby who fought so hard, I couldnt give up that easy. They did the surgery to put a drain in and we were told she may not make it through it. Thank God she did. She received so many iv`s of antibiotics, platelets, blood, fluids etc. When they put the drain in they could still see some pink intestine so we had a little hope and she seemed to stabilize a little bit. However she began having problems with her blood pressure. They tried several medications but couldnt get it to stabilize so she could have to surgery to remove the dead section of the bowel. At 5:30am we were told they had exhausted everything and it was time to hold our baby girl and just love her. We were moved to a private room and did just that. Sadly at 12:15pm on June 29,2011 we had to say goodbye to our little girl as she went to be with Jesus! Our hearts are so broken and I truly believe the fortifier that I have since found out was made with cows milk is responsible for this!!!! I have the FDA looking into the possibility now as so many people I have talked to have told me their babies too contracted NEC after being put on fortifier or having it increased. Please feel free to contact me if you are interested in helping me to try to prevent other parents from going through the hell we have with NEC. I can be found on facebook “Emma Baker” or my email is emma45154@aol.com. I refuse to not try to have something good come out of my daughters fight.
Emma,
I just don’t understand why anyone would give cow’s milk fortifier or formula to a preemie… it makes me so mad. My daughter, Madelynn, was also given formula on the Sunday morning before she died. On Mother’s Day… when I got to the NICU that morning I was so mad. I could not believe they did that when I had over a gallon of breast milk in their freezer. I spoke to every one I could to tell them it was unexpectable. That Thursday, almost exactly 4 days to the hour she developed NEC. I don’t know if she was already having a slight NEC situation before the formula and if the formula made it worse but there was more straining when pooping after the formula and more apnea after the formula. It just makes me sick. After everything I have read since my Madelynn passed on May 12, 2011 I can not believe that NICUs would not insist on using only breast milk, from the mother or from a donor.
Katie,
I have searched and searched for material on NEC and it seems there are really no concrete answers. There is so much trial and error because no two babies are the same. I lost my daughter when she was almost 6 weeks old and at first I threw myself into research because I wanted to blame myself. But there was nothing I could have done any different. I’m just now accepting that.
After she was born I did so much research, I read so much and not once did Necrotizing Enterocolitis come across a page. I would read at the NICU while she was sleeping in between kangaroo care and breast feeding attempts. The morning she was diagnosed I was so mad that I didn’t know anything about it. I had read 2 preemie books, countless internet articles and several text books on every possible health problem she could have and NOT ONCE did I hear or read anything about this horrible, devastating disease.
I have been in therapy once a week since Madelynn died. It has really been a great outlet for exploring all the transitions of grieving for my baby.
My sincere sympathy to all of you that lost your precious angel to NEC.
My grandson was born July 10, 2010 and was NICU for at least a month or so. During this time only 4 of us were allowed to visit my Little Angel Jordan which was my daughter-in-law, son, and the other grandmother. I am still very angry with this hospital because not once did inform us that he had NEC. I still remember that morning when I missed work because the night before my son had called and he was very upset because the were giving the baby his 2nd transfusion. When I arrived they informed me that they needed to contact my daugthter-in-law and son; frantically I called and told them they have to come to the hospital. My daughter-in-law mother arrived and then them. By then, his condition had worsen and they were told he had to be transferred to a hospital that was more equipped for severe health problems. I remember the nurses putting curtain stands around us 4 to spend with him before the trauma team arrived to take him to the University Hospital. Once he arrived we were not allow to go in until they worked on him. He was gray and his little body just layed there while so many nurses and doctors worked on him,. That is when we were told about NEC, in which we had no knowledge of. I lost count of the transfusions he received. At one point we were asked if we had a religion preference in which we are catholics. They asked if we wanted to baptize him and we did and were even allowed to have our family come and see him becasue his chances of survival were very slim. I remember my older grandson who is 6 years with us every day and going in to see his baby brother. This was a very difficult for us because every day was either up or down. Once he was stablized he had surgery which they were able to remove the infected intestine and repair his hernia. We spend at many hours waiting and praying and with all the love of our family, friends, the nurses and doctors and more importantly FAITH my grandson survived. He turned 1-year, July 20, 2011, and we sure celebrated his Birthday. Many times I stare at him and my eyes tear up with joy and I Thank God that this little guy, my angel is here with us.
Belive me everytime he gets sick I panic with worry. Last night he was taken to the ER because he had been vomiting and running a fever and the doctor he saw earlier recommended they take him since his X-Ray should some fluid(?). The ER Doc released him and this is when I worry more because I still remember the NICU doc where he was born and did not diagnose NEC. I truly wish there was more information for us to read and learn. I ask myself everyday and talk to my sisters about why he was not diagnosed earlier. What about other babies that are misdiagnosed. I will continue to read to keep abreast of NEC.
I’m so sorry for all those babies who have suffer this and have died. I had my baby boys (twins) at 27 weeks. I called everyday to see how they were doing and specially to see the weight gain on july 2 I called and ask for my weakest child since I thought I didn’t really have to worry about the strongest when I called they said that the strongest had air in the intestine so I thought ok he needs to fart. An hour later they called me and said the x-ray result sugested that indeed he had air in the walls while I was getting the news I started crying little did I imagine that this could result in his death. I was in the middle of eating my family forced me to eat I got to the hospital an hour later. They said that he would be intubated only if he had any deeps he didn’t but they intubated him because they didn’t want to do it in an emergency situation later on I found out that he was intubated because that’s the only way he got a bed at sick kids and they worked all night to transport one baby to another hospital to make room for him. They finally decided at 6 to do an ultrasound and he went to surgery at 8 the next day at 9 we found out that there was nothing that they could do for him we had to take him off life support we took him off life support on july 4 three weeks after he was born same day and time on a sunday afternoon 1:30pm. No one ever told me he could’ve died I have stay with so many questions without an answer. I keep on having nightmares should I get some help? My other baby boy is doing just fine his home now
Cristy,
Therapy has been very helpful for me. I started weekly therapy about 2 or 3 weeks after Madelynn died. I am now going every 2 or 3 weeks. It is important to find the right therapist however. I found mine through a referral from my OB/GYN.
Until the morning that Madelynn was diagnosed did I ever know anything about NEC. And I never thought for one second that she would die until that horrible day.
The pain becomes bareable eventually, but it never leaves. You learn to live with it. This site provides an outlet to talk to other parents that have gone through the same thing you are going through.
Take care,
Miranda
Mom of Madelynn, Born 4/1/11 at 9:33 PM and became an angel on 5/12/11 at 4:11 PM
Sorry he died when he turn three weeks. I looked for some answer when I feel deeply despress and hopeless.thank you for ur advised. Just had question they said that’s lots of premature babies get nec but there are many who don’t go to surgery and die its that right? Is that nec or pre-nec ?
I don’t believe there is a such thing as pre-NEC, but I could be wrong. From everything I have researched there are so many unknowns with this disease. I know you are deeply depressed, so was I… and also very in shock that she died period. There needs to be a lot more research done on NEC. Sometimes it is caught early enough that antibiotics can treat it and sometimes, like in the case with my daughter, it hits so fast and so severe that even within an hour the baby’s entire gut has began to die. Please feel free to continue posting questions, thoughts and concerns as you have them.
Cristy and Miranda,
I share the hopeless feeling and hollow feeling…and NEC just fills us with so many questions we can’t answer. NEC is being researched on and we try to bring the most research here on the site we can. Cristy, Caitlyn passed away from NEC and did not have surgery. Many babies are too sick and NEC is so rapid that surgery is not always an option.
Miranda and Cristy I am glad you can network on the site…this is my wish for this site…
Elaine
On August 19th, 2011 I gave birth to my baby girl at 32 week & 1 day gestational weeks.
She was born healthy & strong and no one ever saw what was going to happen 5 days later.
On August 23rd, she started intolerating her feedings. She was spitting up each meal. The nurses & doctors ensured me that this was normal for babies and didn’t seem to think to have much concern. The the end of the day she started becoming instable. Her blood pressure was a little off & they put her on ventilator so that she wouldn’t expel too much energy trying to breath…although she was still breathing on her own. They x-rayed her chest & saw that there was some fluid in her lungs which occurred when she was spitting up. But her stomach looked clear. They put her on antibiotics & under the UV lights again for jaundice. I was in bits…I couldn’t stop crying all day & some thing in me felt like I was going to loose her. I couldn’t mutter the words all day and night but I cried all day and night worried I was going to loose her. She was doing so well…how could she be doing so badly all of a sudden?
On August 24th, she continued to battle with her blood pressure. St. Joseph’s (toronto) hospital phoned Sick Kids probably around 3pm that day to see if there was a space for her incase we needed to take her over. At that point, it was just an ‘incase’ and we were given the option of putting in a long line the next day & they had taken her off her feedings. We were told she would be off feedings for 7-10 days. We still had hope that she’d be here in 7-10 days. Things started to spiral so fast & she became instable. It took them a long time to stablize her to take her to SickKids. Once we got there, they tried to get a transfusion going & taking more X-Ray’s…at around 8.30pm that night, she passed away. We were there the whole time watching as they tried to keep her little heart going but she was too sick. I was completely broken…I couldn’t believe she was going to die. I didn’t want to believe it. I felt like I was in a really bad dream. She took her last breath in my arms…and we spent hours with her until we went home that night. Completely broken.
This disease is horrible & completely unfair. I hope hospitals will find ways to prevent this. It frustrates me that there is some research and they find that probiotics can work but NICU aren’t using it? And this is the first time I’ve heard of NEC…why isn’t it talked about more?
Thanks for creating this site. I hope it helps parents of NEC understand & have support.
So sorry about your lost! Yes I’m disgusted by the treatment they give at st josph health center my son was there they almost burn his belly and many more things eventhough the baby didn’t know how to properly feed I’m glad he came home.