Today is necrotising enterocolitis (NEC) day.

Caitlin developed NEC at exactly 1 month old. Her tummy had been distended for a while but she’d had multiple abdo x-rays and we’d been assured it was just “a CPAP belly”. She’d been a bit quiet in the morning, so I thought I’d have a nap, as she was asleep. When I got back to NICU I knew she was seriously unwell, and over the next couple of hours she started deteriorating before my eyes. 

I called Darryl to tell him to come to City. It’s really difficult to convey how worried you are to a non-medical person, whilst wanting to protect them from the gut wrenching reality which you think is happening - but you hope there’s a chance you’re wrong. Darryl understood how bad things were when he arrived and Caitlin was being intubated. I remember him asking me how worried he should be and I said 8/10, to give him a bit of hope. I knew it was 10/10.

I knew we had a long night ahead of us, so we went home and tried to get some sleep. We had a Papa Johns like nothing was happening! At 3:45 I had the urge to be with Caitlin - whether she was conscious or not - and at 4:00 we got a call to say she’d deteriorated even further and she needed to be transferred to QMC. 

The drive to QMC was awful. I knew there was only one reason for transferring Caitlin to QMC - for surgery. I knew the survival rate of NEC, and how that plummeted if surgery was needed. I’d seen how the sepsis had overwhelmed her in a couple of hours, and I didn’t see how she could survive the operation.

We arrived before Caitlin did. When she came out of the ambulance she looked horrific; almost unrecognisable. Her abdomen was grey and massive, and she was swollen all over because her kidneys were starting to fail. I can remember hearing a howl - it’s the unique noise that I’ve only ever heard come from women who’ve lost a child. Then I realised I was the one making it.

She was taken to theatre. Signing the consent form was so hard. If she had the operation she might die; if she didn’t she would definitely die. I felt like I was signing to agree for Caitlin to die so I made Darryl counter-sign it so I wouldn’t feel solely responsible for her death. I could barely stay upright for the walk behind the transport incubator to theatre. We went past the hospital main entrance and someone stared at the transport incubator. I wanted to punch her.

The nurse told us to say goodbye at theatre reception, and asked if we wanted to take a photo. I knew the subtext - her last photo.

Caitlin somehow survived the operation, although she lost over half of her small bowel. It had perforated and her abdomen was full of pus. 

The next few days were difficult as we tried to get her pain under control. Slowly, she came off the inotropes, then the ventilator, and her numbers started to improve. We had our baby back!

The next few months were difficult in a different way. Her stoma didn’t work very well and the skin on her abdomen started to break down because it leaked so often. The decision was made to reverse it early. 

At her reversal operation, things didn’t go as smoothly as hoped and she lost quite a bit of her large bowel too. She became septic again, although not quite as badly as last time.

Long term, she has difficulty absorbing milk and growing, because she has so little bowel left. She has short bowel syndrome but luckily has so far escaped long-term PN by the skin of her teeth. We know it’s always a possibility, but we’re hoping to avoid it/kick it as far down the road as possible.

No-one fully knows what causes NEC: prematurity is a risk factor, but most premature babies don’t develop it. More research is needed to understand what causes it and how to prevent it. Please consider chucking a couple of quid in NEC UKs direction to help them with this.