My daughter was born with rare birth defects called oesophageal atresia and trachea oesophageal fistula. She spent the first year of her life in hospital which was hard in so many ways. Seeing Michelle, my wife, struggle with it all was one of the toughest parts because there was nothing I could do to make it better. We were told that there were problems with the baby from quite early on in the pregnancy and every time we went for a check it seemed like we were being given new or different news. Michelle would spend hours googling trying to find answers and it was really hard to take it all on board while trying not to lose your sanity with all the uncertainty.
Eden-Olive was taken away almost straight away when she was born. It’s all a bit of a blur, I can just remember having the time to kiss her little hand. At only two days old she went down for surgery. When she came back she was on ventilator and had been completely paralysed so she could heal.
While we were on the unit she had more procedures than I can count. Watching your little girl suffer while also watching your wife’s heart break as a result is very hard to cope with. I just had to stay completely focussed on supporting Michelle because that’s the one thing I could actually do.
The worst day for me was when Eden-Olive stopped breathing in Michelle’s arms. She’d just breast fed for the first time and it was this really magical happy moment in the middle of all the dark stuff. But she suddenly went floppy and blue in Michelle’s arms and I had to shout for people to come and help. This ended up happening more times than I can remember. We’d be holding her and she’d just go floppy. It was petrifying and it got to the point where I felt almost too anxious to give her a cuddle. At least when she was in her incubator attached to the monitors the machines gave us forewarning that something was wrong.
Michelle couldn’t breast feed Eden-Olive after that so she became obsessed with expressing milk for her. She just desperately wanted to be a normal mum. In the end we had two freezers full but she never ended up having it because by then she was being peg fed. She still receives most of her food that way.
We’d spend nearly all our time at the side of Eden-Olive’s incubator, reading and talking to her so she’d know we were there. On some days Michelle found it too hard to spend another day in the NICU so I’d go on my own. I just kept telling myself that I needed to get my head down and keep on going, for the three of us.
But life outside the NICU didn’t stop. I also have a nine-year-old son, Jesse, that I was trying to keep life as normal as possible for. He’s been so excited about having a new sister but in the end he didn’t get to meet her until she was eight weeks old. It’s hard to understand yourself why these things happen but explaining it to a little boy who just wants to see his new sister is tough.
I hated leaving Michelle on her own but my work was based in Oxford as time went on, it was becoming an increasing battle to get time off work too. There was also the house and making sure I had time with Jesse so I didn’t really get time to think about what was happening, I just had to get on with it. I think in the back of my head I also thought that if I did stop for a minute to think that’s when it would all come crashing down.
We were lucky to meet some really good people during our time on the unit who were going through similar experiences to ours. We’d talk to each other about the medical stuff knowing we’d all understand but we’d also talk about normal things too. I think that kept me feeling sane and I know we’ll all be lifelong friends as a result of the experiences we’ve shared together.
If I had to give advice to another in the situation we were in, I think I’d say just keep on going. It may not feel it at the time but things can eventually get better.