My son’s NEC diagnosis – Kerry’s story

After a relatively smooth journey through the neonatal care, Kerry’s son Kane was diagnosed with NEC.

Kane was born at 30 weeks, due to me developing intrahepatic cholestasis of pregnancy (ICP). For two weeks I had felt him move less and less and he had stopped growing at 28 weeks. Enough was enough, and he was delivered weighing 3lb12oz.

He went through the NICU learning how to breathe, learning how to maintain his temperature and learning how to feed. We celebrated every little milestone as he came off breathing support, was taken out of an incubator and placed in a cot. Although there were a few minor setbacks, as is the nature of NICU, Kane was making fantastic progress.

It was hoped that within two weeks he would be able to go home – we were just waiting for him to master feeding on his own. The thought was so exciting and I couldn’t wait to get Kane home to be with his sisters.

Baby Kane on his mother's lap in hospital

When Kane was 52 days old, I was unable to go in to visit him because I was unwell. Although I was sad to be away from him that weekend, I felt confident knowing he was progressing so well and receiving the care he needed.

By Monday I was better and was thrilled to be going in to see him again. The room was dimly lit as it was quiet time for the babies. As soon as I looked into Kane’s cot, I had the feeling something wasn’t right. He looked incredibly pale and when I picked him up he was breathing quickly and seemed so sleepy. The nurse called the doctors over and they took bloods to test for an infection.

At this point, it was incredibly clear that something was very wrong. His heart rate kept dipping dramatically as well as his oxygen levels. I stayed in the hospital as long as I possibly could that night. Once he was settled and had started a course of antibiotics, I told the nurses I’d return first thing in the morning.

After a restless night, I got up at 6.00am and called the hospital. They told me that Kane had stopped breathing but they had managed to bring him back round. They were moving him into the high-dependency unit. My heart sank. I felt sick to my stomach. It wasn’t that long ago when we were making plans for Kane to come home. How could things change so quickly?

I rushed to the hospital. While I was on my way there, he stopped breathing again. By the time I arrived, he was attached to multiple monitors and lay motionless in a neo crib with a heat lamp over him and his eyes closed. He was so pale that he was almost see-through and I could see every vein in his body.

It was such a shock to see Kane in that condition that I decided to meet his dad downstairs so that I could warn him about what lay in store and he could go in feeling more prepared than I had.

When we got back upstairs to the unit, a nurse was waiting for us at the door. I still remember her exact words as if they were being spoken right now.

“I’m so sorry,” she said, “But Kane has stopped breathing and he’s really struggling. The doctors are all in with him intubating him and you can’t go into the room just yet.”

I broke down. The nurse took us into one of the parent bedrooms and told us that once he had been moved into intensive care we could go and see him.

When we were finally allowed into intensive care, a place we’d thought we wouldn’t have to return to, Kane had been sedated. He was back on a ventilator but at least looked more peaceful than earlier.

Several tests and x-rays were done over the course of the day and we were finally given a diagnosis.

Baby Kane receives specialist care for NEC

Kane had necrotising enterocolitis (NEC). They told us he was extremely poorly and that they were going to use three different antibiotics to treat him but if these didn’t work they’d have to perform surgery. Even seeing how ill he was, I never thought it would get to that and was sure the drugs would do the trick.

We stayed with Kane until the early hours of the morning. We had been given a parent room on the unit and a nurse sent us to try and get some sleep.

There was a knock on our door at around 6.00am. The doctors were now struggling to ventilate Kane. His stomach had become so swollen that there was no longer enough room for his lungs to inflate.

I walked into intensive care and a surgeon was in there talking on the phone.

She said: “I’ve got an extremely poorly baby. Prepare the theatre; I’m bringing him over now.”

It took me a minute to realise the baby she was talking about was my own.

I was handed consent forms and told all the risks of the surgery – including death. This terrified me but she also said that if they didn’t take him for the surgery now, he wouldn’t have any chance of survival at all. We had to give him that chance. No words can explain my heartache and pure terror as I signed that consent form.

Kane’s dad and I walked our baby to the theatre. I kissed Kane’s head and told him that he could do this. I told him how amazing I thought he was and that I could never explain how proud of him I was or how much I loved him.

We were taken back to our bedroom and were told that someone would come and get us as soon as there was any news.

We just sat there, staring into space and fearing the worst. I didn’t know if I’d ever see my baby again and I was terrified.

After around 90 minutes, the surgeon knocked on the door. They’d removed a small part of Kane’s bowel, drained fluid from his abdomen and formed a stoma to give the infected part of his bowel a rest. The operation had gone to plan but we’d have to see how he responded in the next few days.

When we went to see him, Kane was on another kind of life support that was causing him to vibrate as several breaths per second were delivered. As he lay there sedated with a stoma, I had no idea how I was going to care for him and felt terrified of hurting him if I touched him.

We had Kane christened as soon as he was stable, a couple hours after he returned from theatre. They put screens up around his crib and the hospital chaplain performed the service. It was not the christening service you expect to have; usually the service is a joyous day full of fun and surrounded by friends and family. We weren’t sure at that point which way things were going to go and it was important to us that it was done in case the worst was to happen.

Nothing changed for a gruelling six days. Then on day seven, the surgeon told us Kane was starting to show signs of improvement. The relief that coursed through my veins was unbelievable.

Kerry holds baby Kane in hospital

Over the next two weeks, I learnt how to care for Kane’s stoma and how to change the bag. Day by day he started to make improvements and three weeks after the surgery he no longer needed life support. He was breathing on his own and I was able to hold him – it felt amazing!

I didn’t dare to relax but we began making our way back through the different levels of care again. Kane was smiling once more. Six weeks after our NEC diagnosis we left the NICU together as a family.

Kane had his stoma reversed in January – four months after the operation had taken place. He is doing so well and I count my blessings every day that he is still here with us. I can’t wait to see what his future holds.

Kane at home and smiling

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