Archive for June, 2011

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 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.

What is NEC?

June 27th, 2011 by Elaine and Chris Jones

Necrotizing Enterocolitis (NEC) is a gastrointestial disease which typically affects premature babies. The disease creates both an infection and inflammation in the bowels. It is still rare in the Neonatal Intensive Care Units, but when a preemie gets it, chances of survival decrease dramatically.

NEC seems to occur within the first two weeks of birth. The baby usually has started milk feeding. There is still no known cause, only theories. The good news is that research continues. Doctors like Dr. Jae Kim are making their best efforts in finding the cause and prevention of NEC today.

Sam’s Story

June 24th, 2011 by William

2 days ago my wife gave birth to a full-term, 9.10 lb. baby boy. The doctors were so impressed at how big he was and alert. Upon the first night of being with our son, we noticed he was having some trouble breathing, nothing serious, just sounded stuffed up. They took him into the nursery and tried clearing out any remaining amniotic fluid that may be left in his body. All his readings, as far as, his breathing, heartrate, were excellent, but as a precautionary method he was taken to the NICU. In the NICU they treated him with antibiotics, because they saw his whiteblood cell count was a bit high. Otherwise they thought he was a very healthy strong baby. X-Rays were taken, but nothing was conclusive. In the meantime, we began breast feeding him and he took to it very well. He even filled many diapers with meconium poo.
This morning we were told that they fed him formula and a few hours later he vomitted some mucus and bile. This had the doctors do another x-ray. This time they felt that our boy has the possibilty of NEC. The doctor said that they are not sure because our boy is so big and has good numbers, but the x-rays, and bile in the vomit, send up a red flag…
So here we are scarred out of our wits and looking for any kind of positive sign. I cannot eat, sleep, or even cry at this point. My wife and I are saying our prayers, but we are trying to find solice in others who may have seen a similar scenario. To all the families who have lost a child to NEC, are truly sorry. Please advise…

Finn’s Story

June 24th, 2011 by Alicia Love

Finn Love 11/01/10
He was born 9 weeks early because BV. HE was 3.8 lbs. Scored 9 Apgar. HE breathed with a cpap for 3 days only. He developed a bloated belly & green bile on 11/4. He was still active. He had not feed yet. They thought it was a mal rotation he was transfered to another hospital. They tested and retested never diagonsed the issue but the belly went down and they feed him. First the nurse feed him formula even though I had tons of breast milk in the fridge. We noticed she was doing it and she just said she didn’t know we had breast milk. Isn’t she suppose ti check??!! He stared doing better & gaining weight and the transferred him back to original hospital. He did well for 3 days before getting really sick. We noticed he looked really bad the day before with dark circles under his eyes but they told us it was nothing.
When he got sick again they told it was a blockage in the intestine or NEC but it would clear up with antibioctics. The transferred him again but it toke 8 hours for them to pick him up. 8 hours!! With no treatment. Both doctors had told each hour counts with NEC. He got no treatment for 8 hours. We called 4 times wondering where they where. No one should wait 8 hours for a transfer let only a baby!
We started to get treatment at the new hospital but nothing worked. It took 5 days for him to die. He got surgery but nothing worked.
We are not pleased with the nurse or the transfer. Or the first non-diagonses. Don’t know if he never drink formula or if he had be treated in those lost 8 hours that he would be here but it really upsets my husband and I. Wish we knew more so maybe he wouldn’t have been feed so soon after have a issue in his belly. They say it leads to NEC if the baby had another issue in his belly. Also maybe it was NEC even though he hadn’t been feed yet. He had many other sign.
Thank you for letting my share and other
Alicia Love

Kevin’s Story

June 24th, 2011 by Patti

This is a wonderful website for sharing information. I came on here to see if there were any stories or resources for NEC information on ongoing problems but found wonderful stories from amazing people. I had twins in 1993 that were born at 32 weeks, Kevin and Kyle. Days after being born we were told Kevin had NEC and was being transferred to another hospital across town. I knew nothing about NEC, only that the doctors told us not to expect Kevin to make it through the night. My mother had come down from Idaho where she had very recently married the love of her life, John.

After spending hours scared to death, my mother went to my house to change clothes but on the road trip there she called to tell me her new husband John had just had a heart attack and died. It was not the best day in our lives to say the least.

Kevin thankfully got better and was able to come home about a month later. He and Kyle are now 17 years old. They are the smartest, loving, happiest boys you could ever met. I am worried about Kevin lately though – he is having bad intestinal problems with constipation issues. Our gastro doctors are just telling us to put more fiber in his diet but I think this is more.

When Kevin first started getting better back when he had NEC the doctors told us it would be possible he could have scar tissue when he gets older and this may cause issues. The more I push the issue with the doctors the more they ignore it and blow it off as an infant disorder that has nothing to do with him at 17.

Any info with ongoing issues from NEC would be helpful. I am so sorry for the lose of babies on this site. It was a horrible experience 17 years ago and I could not imagine life without Kevin today.