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Louie’s story

January 2nd, 2009 by Emma Lowe

Writing this only 2 weeks after louies death is killing me but i need to write it down so maybe someone who knows what I’m going through can understand.

My beautiful son Louie was born on 23 november 2008 although 8 weeks early and weighing 2lb 14oz he was doing so well, breathing on his own within 4 hours, the first few days after Louie were a blur as i was ill.

I lost alot of blood due to a low lying placenta. I spent as much time with him a I could while i was in hospital. But I was let out on day 4 and has to leave louie on the neo natal unit. as I had had a cescarian I couldnt drive so had to wait for james to finish work and then only got to spend maybe 2 hours with him. On 29th november i went to the hospital before James and I remember texting james to say he wasn’t well and kept being sick, when james arrived Louie seemed ok we both had a cuddle and said goodnight. when I called the hospital that night they said Louie was fine and to get some sleep.

8 hours later i called to see how he was during the night. They said he had been unwell and to make our way to the hospital. I knew something bad was wrong. Mothers instincts or maybe history repeating itself i dont know but I went in to complete shock and panic. When I arrived at the hospital Louie had been intubated he looked so pale had no colour in his face and was not my little boy that I had left 12 hours earlier. The nurse explained that Louie had nec but they couldnt tell the extent so he neede to be transferred. The hospital couldn’t operate on Louie so was waiting for a special neonatal team and ambulance to arrive to stabilize Louie as his blood pressure was low which seemed to take forever, at 2oclock sunday afternoon Louie was transferred to st georges hospital neo natal unit for surgery. At ten oclock that night he had the surgery but the doctors explained that the whole of his bowel was white which meant it had no blood flow so there was nothing they could do.

I don’t remember much else, the family arrived to say goodbye and we had Louie blessed. At 2.50pm on monday 1st of december we switched off Louie’s life support machine. Although he went very peacefully and it was very dignified, I wish nobody ever has to go through what we have had to. I lost my first baby megan due to preeclampsia so knew every think about loss in pregnancy. I just wish there was more information about diseases such as nec.

Kayleigh’s story

January 2nd, 2009 by Lisa and Brian Dingess

Our daughter Kayleigh Dawn was born at 23 weeks on Sept 4, 2008. Kayleigh lived for 43 days in the NICU. She was a beauitful baby girl with a fighting spirit. My husband was so amazed how much she looked like her big sister.

She was doing well. Her head scan results were negative for IVH grades 3 & 4. She had a grade 2 on 1 side of her brain that was absorbing. We were getting more hopeful for her survivial. I believe starting Kayleigh on formula was the start to her problems. I also wish some would have suggested using a milk bank prior to her feeding. I was unable to breast feed. Anyway the what ifs will not bring her back! She did not tolerate her feedings and they were discontinued. By Sept. 30 she had a visible abdomen mass and her belly was starting to get swollen. On that day she was also tranferred to an isolation nursery because she came down with MRSA. My husband & I were devastated by this news. In the meantime her belly was getting bigger.

While small talking to one of her nurses, she said not to be worried the staph infection is your least worries and will soon be cleared up. She went on to say that if she came down with an infection that went into her blood (septic) that is something to worry about. My how things change it only seemed a short time later that this is exactly what happened. Our doctors told us that she now had an infection that had entered the blood, however they could not pinpoint the source of the infection.

In the meantime her condition seemed to deteroiate somewhat. At this point my wife and I tried to be there every miniute we could. It all seemed to start spiraling out of control for our beautiful small but perfect little Kayleigh early on Fri. Sept. 10-08 at around 2am a young attending doctor made a decesion to call her head doctor, and from there a wonderful doctor and his team from Rainbow Babies and Childrens hospital were called in to perform emergency surgery and determine why she was now swollen. I was told as soon as they opened her abdomen up, there it was staring them right in the face, nec had perforated her small intestine wall and therefore she had about a 3 inch section removed. My wife called me around 7am to tell me the news. I immediately went to the hospital with my mom to see her. I was at this point losing it very quickly. However I was relieved that the source of the infection was now found and the surgery was over. When I arrived and saw her I could not belive my eyes she was so swollen I thought she was going to explode, and seeing the extent of the incision was all I could handle, why did my beautiful little gift from the heavens have to look like this?

I was able to talk with the doctor who performed the surgery. He told me how amazed he was at how her little body seemed to be doing everything it could to hide and fight this. Now we were being overwhelmed with nurses and doctors telling us how sorry they were to here this news. If I rember right I said don’t be sorry she has had the surgery and now she can start down the road to recovery. I think at that point the staff knew her chances were grim. Our attending doctor said that the next 72 hours for her would be crucial. If she could just get through the next 3 days that is a major step for babies who receive this surgery procedure. On Sat the 11th she seemed to stay stable vith her main vital signs. I told my wife that we should stay home tonight and try and get ourselves refocused and some much needed sleep. However she said that she just wanted to go up and say goodnight to Kayleigh and she would come right home in about an hour.

I received a call at about 4am Sun Oct 12 from my wife that Our angel was at this point very critical and had not urinated in since the surgery, she was now dealing with renial failure. The three different medications that were given had no effect. I went right to the hospital and after the doctors told us of the sittiuation at hand that there was nothing more medically the could do. They told us that they wanted to call a meeting with my wife and I on Monday morning with our attending doctor to discuss the next course of action. We told the staff that we wanted our beautiful Kayleigh’s ventilator removed, and all of the 7 plus lines she had hooked to her. They told us she would not be in any pain and she had not been in much the past 3 days from being extremely sedated for her own comfort. We put a call into our church and told them the news they were able to track down our reverand on his way to mass and reroute him to us. Our reverand, my wife, and I talked to our beloved Kayleigh and said some prayers for her. Then my wife and I told our beautiful angel that it was ok for her to go to Heaven and be with her new father and savior and all of the other little angels that have gone on before her. They put my wife and I in a private room and brought us our little Kayleigh to hold her while she passed on in my wife’s arms.

We stayed there holding her for hours listening to the sounds of the ocean from a cd we had obtained for her also, seeing how tried and true it has become with our 5 year old gift from the heavens Kayleigh’s big sister Marissa Grace. I am going to come to a close here now, Kayleigh I will never forget the 43 days of such love you brought your Mother and I. I look forward to the day when I will see you again and I am able to take you on a hike in the beautiful mountains of heaven on a warm fall day when the leaves are ablaze with all of the color of our fathers kingdom!

LOVE YOUR MOM & DAD!

Dawson’s story

September 7th, 2008 by Mary Dawson-Cole

Dawson Thomas was born Jan 23rd 2008. He was born at 29 weeks. He was airlifted from Sudbury to Women’s College Hospital 2 days later. He was delivered early as I was sick with high blood pressure, Preclapsia. He brought us so much joy. He did very very well. He had a few bad days, but he grew so fast. In no time he went from 2 pounds to just under 5lbs. Watching him progress was both scary and amazing.

I would spend hours just watching him. His dad would read to him and I would watch them both together and longed for the day to take him home. Everyone we knew prayed everyday for us to take him home. Countless phone calls were placed home to let Grandparents and family know his every development. The day before Dawson got sick, mommy bathed him and put him in his cot and thanked him for a perfect day. We were only days from coming home. We were awaiting a transfer to Sudbury and were out of the NICU. It hardly seemed possible. All the parents, nurses and doctors said he was doing great and would be home in no time. Parents would say how lucky we were and it was amazing his breathing was so good. Then, on March 13th he got NEC. He was transported to Sick Kids and underwent surgery. His little body just couldn`t recover. Our beautiful baby died on March 15th. Not a day goes by that his dad and I don`t miss his beautiful little face. Our precious boy was truly a gift and we will never forget him. Thank you to everyone who supported us. Thank you for letting me share our story. Every time Mommy sees a butterfly she thinks its you coming to visit. Each day on this earth, is one day completed before I see you again. Love Mommy and Daddy.

Declan’s story

August 25th, 2008 by Linda Richards

Our son was born at 25 weeks, 5 days gestation because he had developed fetal hydrops from a virus I had contracted and passed to him. I was exposed to fiths disease while pregnant. Our son became severely anemic and built up fluid surrounding his organs in his abdomen while in the womb. The only good chance he had for survival was to be delivered early, according to our perinatologist. Our son, Declan, was born on March 19, 2008. He came out crying which shocked everyone and after a quick kiss on the forehead he was rushed off to the NICU. I spent 9 weeks by his beside helping the nurses care for him and actively doing kangaroo care. He was doing well and only had typical preemie issues to deal with once he recovered from the virus. Like most other stories I have heard, our son got sick quickly after having a “good day” in the NICU. When he didn’t respond to antibiotics immediately, surgery was performed and we discovered nearly all of his small intestines had died. The doctors made him comfortable and we loved on him until he passed away on the evening of May 23, 2008. The pain that comes from losing a child is unbearable at times. Only those who have experienced it can understand the full range of emotions that plague us mothers.

I have had such a great support network of friends and family. I have also kept a blog at www.caringbridge.org/visit/miraclebaby3 which has helped me cope with our loss.

Maddison’s story

July 27th, 2008 by Lindsay Robinson

Hello Maddison was born on 15.12.06 weighing 3lbs 14oz, she was born 3 months early due to my illness, I have a heart problem, I was told I may never have any children of my own because of my illness, so when I found out I was pregnant I was over the moon.

I went to my 3 month scan I was so excited, I saw my baby and I just felt tears of joy streaming down my face, then my 5 month scan came I couldn’t believe I was having a baby, she was growing ok and every thing was normal.

Finally she was born she was kicking and waving her arms about she was beautiful they said Lindsay you have a healthy little girl. As each day past she was gaining weight and doing so well 6 weeks later she was moved in to a cot and in to home nursery I was so happy, a nurse said to me not long now and you will be taking her home. Then I got a phone call it was the hospital – can you come straight away Maddison’s not too good we have had to move her to ICU. I went straight to the hospital and there was my beautiful little angel her tummy was swollen up like a balloon, they said we need to operate so they did but days went on and she wasn’t getting any better so they did another operation to see if they could do anything else but they couldn’t. They took me and my family in to a room and they told me there was nothing else they could do. I had her baptized and then turned her machine off I could feel my heart breaking more and more. I was taken to a room where me and my family could spend time with her. She was a little fighter and my miracle. Maddison died in my arms with my hand on her heart, at 8pm on 31.1.07, my world was shattered, a doctor said we call it the silent killer because they don’t know until the baby’s tummy is bloated by then its to late. I think they should tell every pregnant woman about NEC in babies.