Clara’s first operation was on 2nd January 2017.
We sat down with her surgeon, Mr Alex Lee, to talk about what surgery meant. Mr Lee assumed, based on all the medical evidence he had, that part of Clara’s bowel had died off and as a result she wasn’t able to digest well. This was causing her stomach to throw up the green acid we had seen in earlier vomits.
There is nothing like signing a consent form for an operation. We needed to be practical, to understand what we were agreeing to, somehow keeping our emotions at bay. We were talked through the purpose of the surgery, what they intended to do, and the risks. “Death” was clearly handwritten on the last line. I know that’s a risk with any major operation, and no one can predict what might happen, but to see it handwritten in ink was startling. It then became a possibility.
The porters arrived to take Clara away with no forewarning. They then sat for an hour whilst nurses and doctors scurried around, transferring all of Clara’s fluids and other medical accessories from her incubator unit to the surgical transport unit which then attached to her incubator. Eventually, they were ready to go.
Clara was wheeled out of the double doors and she was out of sight.
Around five minutes later we decided to leave also and go and sit in the car. I couldn’t face sitting in the hospital M&S cafe, watching mum’s who’d had healthy babies, or interacting with staff who were oblivious to the chaos in my world. I also couldn’t face sitting in Intensive Care without my baby there. In the car, we were safe, but sat in silence lost in our own thoughts.
Three hours passed, darkness outside settled, and we headed back inside to NICU. We only sat for around 15 minutes before a nurse called to say she was going to collect Clara from surgery. We sat bolt upright in anticipation, forgetting the walk from the children’s unit at the other side of the hospital was a good 30 minutes. Dean watched the CCTV screen at the end of the room, and around 40 minutes later he was convinced he saw Clara only around the corner.
He was right. Within a few minutes she was back, in her little incubated bedroom on wheels. The nurses fussed around her, plugging her numerous cables back in to the wall. The doctors busied themselves with their heads in their paperwork. For five minutes, nobody caught our eye.
Eventually, a female doctor came over and said Mr Lee would come and talk us through the operation. That was all she said.
More time passed and the lead consultant came over. He told us it wasn’t good news, but Mr Lee would tell us more shortly. That was all he said.
Our hearts sank.
We had been back in NICU, with Clara in front of us for an hour, before Mr Lee arrived. He suggested we go to the quiet room to talk.
Mr Lee told us how he didn’t find what he expected when he opened Clara up. He was expecting to see a few centimetres of unusable bowel. What he saw was a significant amount of unusable bowel and he’d had to remove 75cm of it. This left Clara with 10cm of ‘good’ bowel, 25cm of iffy bowel, and 5cm of bowel now left at the bottom, no longer connected to the stomach.
Her prospects weren’t good. We were advised that she may not live beyond the next 24 – 48 hours and we should mentally start to prepare for that. If she did survive, then the 25cm would need to be assessed again at the end of the week as without that she still couldn’t survive.
What could we do? As parents we were unable to help our little girl, as humans we were unable to take control of the situation and turn it positive, there was literally nothing we could do. We felt completely helpless.
Why us? Nobody ever thinks this would happen to them. We are healthy young adults, we have a life we love, we are happily married, and have just spent 18 months renovating our home to be the perfect family nest. A chronic illness, let alone in our newborn, was never on the cards of course. The thought of arranging a funeral for a newborn baby was more than we could handle. All I wanted was to be able to take my baby girl to school, to bake with her in the kitchen and splatter cake mix up the walls. Why was it now a possibility I might never be able to do that?