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.

Neonatologists add nutritional supplements in the form of a fortifier which is cow’s milk based. A recent study performed at 12 different medical centers has been able to study the effect of an exclusively human milk diet, one with not only mother’s milk but added human milk based fortifier. This study looked at 207 infants that were randomly chosen to either standard cow’s milk fortifier or a human milk based fortifier for approximately the first 90 days of life. They found that the infants who were fed an exclusively human milk diet had significantly lower incidence of NEC (50% reduction) and even more importantly had a lower rate of surgical NEC (90%).

This study supports the need for increased human milk use in the NICU and provides the first compelling data that use of a human milk based fortifier can reduce NEC.

Sullivan S, Schanler RJ, Kim JH, et al. An exclusively human milk-based diet is associated with a lower rate of necrotizing enterocolitis than a diet of human milk and bovine milk-based products. J Pediatr. 2010;156:562-7

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.

I had my twin boys on the 26th Oct 04 born at 25wks Thomas weighed 1lb 9oz and Matthew weighed 1lb 11oz sadly we lost matthew at 2 days old due to his prematurity he was just to small. Thomas seemed to do well that is until the 8th of Dec he was unwell not tolerating feeds distended tummy (he was in the same nicu bed where we lost Matthew) gradually over the next few days he went downhill his kidneys went into failure and we were told to prepare for the worst. He was transferred out to a specialist unit we followed and when we got there a dr came to see us and told us the chances of survival were very low.The next day when i went to see Thomas he looked awful ill never forget that day he was grey and had 2 cannulas in his head i thought id lost him then.Well they kept him on antibiotics and after 3wks decided that the only way forward was to operate at last!! after the op he perked up and after 3wks we were sent back to our local hospital but less than a month later he was transferred again,he had developed NEC AGAIN!!! This time was not so bad and after a month we were sent back and 6wks later i bought Thomas home aged 6mths He had actually had NEC 4 times but my little fighter never gave up thankfully. Hes now a beautiful 4yr old with problems feeding-due to not feeding because of the NEC-and possible cerebral palsy -due to a bleed the night we lost Matthew- but i cant thank the hospital enough for saving my little boy I didnt realise just how bad NEC was until after and i read about what a horrible infection this is and how lucky we had been for Thomas to survive 4 bouts of it I think more awareness should be made about NEC as its such a nasty thing to happen and so quick.

Thanks for reading our story

They treated with antibiotics and then monitored her for 24 hours and then she had to be taken for emergency surgery. They waited for us to come and see her as they thought it may be the last time we saw her alive. I will never forget her frail body being transported to from the incubator with so many wired and bags attached to her. I could see how much pain she was in. It was horrific.

She survived the operation and they told us the next 48 hours were critical. We were updated by the doctors with talk of blood transfusions, platelets, blood pressure being too low, kidneys not functioning, lungs filling up with water and on and on…

We are so lucky that she survived and I am so thankful. She has had an abnormal brain MRI and we are now just hoping and praying that she keeps fighting against the odds.

I am so sorry for all who have lost their baby to NEC. I wish there was something I could do to help and I wish they would find a cure or prevention for NEC.

We were stunned to find out a few days later that it was a success and on top of this the embryo had split and we were pregnant with MCDA identical twins. We were told there was around a 2.3% chance of this happening and along with it we would have a very complex pregnancy, which would include many additional risks. We were so excited, but thinking back, how naive we were at this time…

As the pregnancy went on we were sent to Queen Charlotte’s and Chelsea Hospital in Hammersmith for fortnightly scans. At around 17 weeks, we had a scan and came out to the waiting room as normal while we waited for our notes to be written up. They then called us back in for a chat. They told us that one of the babies had a reduced amount of fluid around him and was around 25% smaller than his brother. To keep an eye on things they wanted to see us every week for a scan from now onwards.

We went home very worried, but we felt we were in the best hands and continued to go for regular weekly scans. We also requested we were permanently transferred to Queen Charlottes’s as we were very unhappy with the care we were receiving at our local hospital and had much more trust in the staff at Queen Charlotte’s. Eventually we heard we had been accepted which helped reduce our worry a little.

As the weeks went on, the fluid reduced and the size difference increased. Both of the baby’s doplers were always good and their hearts and other organs seemed to be functioning well. At week 29, the size difference reached around 57% and it looked as the smaller baby’s growth had tailed off.

The doctors advised that we had a planned c-section the following Monday at 30 weeks and 3 days as he felt the babies now had more chance outside of the womb with the help of Neonatal Intensive Care than they did inside.

We went in for the c-section on Monday 27th April 2009. The c-section went extremely well and both our boys were born at 12:29 & 12:31 respectively. Oliver weighed 1400 grams and his brother Joseph just 635grams! We were very worried, especially about Joseph, but we knew we were in a great hospital, all the staff had been amazing and if anyone could help then we were in the best place.

In the first few days, both boys seemed to be doing very well, Oliver was obviously much further ahead of Joseph due to his size. Then 6 days after birth Joseph developed NEC. It was a very severe case, his bowel eventually perforated. The doctors arranged for a Neonatal Transport team to take him to Chelsea and Westminster hospital for surgery, but he was never stable enough to move, let alone be operated on. We had to accept there was nothing anyone could do for our little man now, we gave him lots of cuddles before asking the doctor to remove his breathing tube and he eventually died in his daddy’s arms at 15:05 on Monday 4th May at just over 1 week old ;-(

We were both devastated, but we knew we needed to stay strong for his brother Oliver. Oliver was doing really well, his feeds were being gradually increased and he managed to move out of intensive care and into the special care baby unit that night, so we didn’t have to go back into the high dependency unit after Joseph’s death.

We lived about an hour and a quarter from the hospital, but we visited Oliver daily. Along side this we also had to get on with registering the births, Joseph’s death and all the funeral arrangements. A few days later I developed a throat infection and had to stay away from the hospital for a few days, but my wife visited Oliver every day. My wife then developed Mastitis in her breasts and was in agony for many days so felt unable to visit for a few days. I eventually got over my throat infection and managed to visit Oliver on Tuesday 19th May, the day before Joseph’s funeral. I had a wonderful day with him, the nurses were saying how well he was doing, he was the top baby in the nursery at the time!

The day of Joseph’s funeral came. It was extremely upsetting, be we thought we gave him the best send off we could. We finally arrived home that evening and both burst into tears. An hour later we received a call from the hospital to say Oliver has been sick twice in the last few hours and wasn’t very well. They told us not to worry too much, it wasn’t anything major, they had stopped his feeds for the time being and were keeping a very close eye on him. They suggested we got a good night’s sleep and came in in the morning. We were so shocked as we began to re-live Joseph’s death. We decided to go straight in and we arrived at about 10.30pm that evening. He looked like a different baby, he was back in an incubator with all the monitors back on him, and his tummy was distended just like Joseph’s was. We feared the worst, but tried so hard to keep positive. We were told that they thought he had developed NEC, our hearts nearly stopped, we couldn’t believe it, he was doing so well just 12 hours earlier, even the nurses were so shocked to see it happen. We were told it didn’t look as severe as the case with Joseph, but it they were pretty sure it was NEC all the same. They took regular blood gasses and x-rays of his tummy. The last x-ray showed the bowel had perforated, but they couldn’t tell how bad it was. Unlike Joseph though he was stable enough to be transferred to Chelsea and Westminster hospital for surgery and the surgeon was happy to try to operate and see if he could save our little man. It seemed to take forever for the Neonatal Transfer team to arrive. They had come all the way from Margate as the London ambulances were all busy. Eventually they arrived and made Oliver stable ready for his journey. We were told to get to the Chelsea and Westminster so we were there ready to sign consent forms and speak to the surgeon prior to surgery, so we made our way over. Oliver over took us in the ambulance and eventually we met up with him at the other end.

The surgeon spoke to us and explained all the risks, but he thought he was in reasonable shape for his condition and would stand a reasonable chance of survival. They then took him down to theatre to prepare him for the operation. We said a quick goodbye to our little man and then we went to have some dinner as we knew it would be at least 2 hours before we would be able to see our little man again. We returned from dinner and went back into the parent’s room and waited for the news. Eventually we noticed the surgeon arrive back. He was talking to someone outside our room, but we could tell by the look on his face the news was not going to be good ;-( He entered the room and sat down with one of the consultants. He told us he was very sorry, but when the opened up his tummy, his entire small intestine had been destroyed by NEC. Removing it was not an option; he could not survive on his large intestine alone. We just couldn’t believe what we were hearing! He said they had stitched him back up so we could see him for as long as we wanted before they eventually removed his life support. Myself, my wife and his grandparents spent time cuddling our little man in his last hours. We eventually decided it was time to let him go and we asked the doctor to remove his breathing tube. He was still on morphine and very sedated, so could feel no pain. I continued to cuddle him until he finally slipped away to be with his brother up in the stars!

Now, 36 hours later we are still completely devastated and will be for some time to come I can imagine. We just cannot understand why life has been so cruel to us. To a degree, we had sort of come to terms with loosing Joseph as he was so small and we believe he had given up his life to help his brother survive and thrive. But now Oliver has died we just don’t know what to do, where to turn. It is as if our future and all our hopes and dreams have all died along with our boys!

We like to think that Oliver just missed his twin brother so much he wanted to be with him.

Although we get some comfort from knowing they are now together, we still cannot describe the desperate feeling of loss we both have in our hearts. It is currently unbearable.

If anyone wishes to get in touch we would love to speak to them. Maybe we can provide each other with support in our times of need?

I will also be trying to find out more about research into NEC. We have already raised over £2,500 for the Neonatal Unit at Queen Charlotte’s, but we would love to find a worthwhile research project which we could raise some money for to try and help to ensure another family does not have to go through this devastating loss again…

All our love,
Matt, Joanna and our little stars Oliver & Joseph xxx

I miss her. I miss her ways. As preemie as she was (she gained weight- 2.5 lb). I am so glad I found this site. I really needed to talk to someone that has experienced what I’ve been through. Please someone respond if you can.