‘It’s ok to struggle; no matter the length of your neonatal stay’ – Lucy’s story

Two years on, and the events of my time in the Special Care Baby Unit (SCBU) continue to run through my mind on an almost daily basis. I don’t feel panicked or low or anxious. I am just somehow oddly fascinated and deeply affected by what happened.

I was home within three weeks of my baby’s whirlwind premature birth, and she continued to go from strength to strength. So why do I still feel so preoccupied and consumed by it? Wondering if perhaps it could help, I requested a birth review. It was really helpful but I didn’t really get to the bottom of what happened.

With time, I realised that this three week period contained a stark contrast of memories ranging from some of my most precious to my most dark and intense. Part of me wanted to hold onto those magical feelings of the first ever skin-to-skin cuddle, and the first time she tried to breastfeed. The other part of me wanted to erase the bits that had hurt so deeply.

I didn’t understand why I couldn’t seem to get past it. After all, in my eyes it had been a very emotional yet technically ’straight forward’ journey as far as preemie stories go. I had pre-term premature rupture of membranes at 32 weeks which ultimately resulted in an infection, placental abruption and delivery via emergency c section at 33 weeks. My daughter, Polly had initial breathing support and fought hard to overcome sepsis but she was always stable, and she made progress every day. I was able to stay with her on the unit and she was soon well enough to come home.

Talking to people about it just never really hit the spot. I had many well-meaning comments about how she obviously ‘couldn’t wait to meet me’ and that it’s ‘all fine now’. I even tried seeing a birth trauma hypnotherapist but it really wasn’t the delivery that had caused my reaction.

Eventually, it started to click. Somewhere amidst the discussions I had at the time with other preemie mums and health care staff I realised that compared with others, I felt that our story was 'nothing'. The other mums had their babies earlier, had watched them go through surgeries and held all night bedside vigils praying that their babies would survive the night. Somewhere along the line, I began to unconsciously whisper a mantra to myself that insisted: “You have no right to feel anything but lucky….”

And I did. I did feel lucky. So lucky I could barely cope with it. Watching another mother being led away after her baby could not be saved took something out of me that I will never get back. A piece of my heart left to go and be with her that day as I watched the turmoil and shock wash through her soul and shut her down.

I had no right to cry because I missed my son and partner at home. I had no right to cry because my baby wasn’t gaining weight. I had no right to ache for my baby daughter when I could go and sit next to her incubator any time I wanted. I had no right to cry because I could only hold her once a day for a few minutes. I had no right…

But that didn’t stop the feelings of grief being there, and my self-imposed emotional gag was not serving me at all. I realise now that I had and still have feelings that are valid and deserve my acknowledgment. There isn't a standard you have to meet before your feelings count.

I want to pay tribute to every experience. All mums enter the thunderbolt of parenthood with their raw emotions exposed for all to see, and all our feelings count. If you are a preemie mum, whether you wait hours, days or weeks to hold your baby, each minute of that waiting is excruciating.

When you are sleep deprived, hormonal, away from home and pondering this rather sudden and odd confrontation of a ‘lucky escape’, it is pretty hard to untangle. Interventions were performed to save our lives and I should never have underestimated how this experience would shape me, change me and affect my world. It's ok that I missed my baby so much I sobbed every day. It’s ok that I worried about every weigh in, every feed, and that I struggled with the constant scrutiny of her every move by the nurses. It was ok to feel lonely and broken.

Seemingly insignificant moments took me down. One in particular always sticks with me and it seems such a small thing but it encompasses all those moments where I felt alone. It had been three days since her birth and I had been promised the glimpse of a third brief cuddle but she was too poorly to disturb. I limped back to Maternity for the tenth time that day. I was fighting an infection and my wound felt heavy and painful. Tears stung the back of my eyes as sheer exhaustion washed over me. As I tapped on the window to the back door of maternity blood slowly trickled down my leg.

I was looked up and down by a health care assistant who then gestured to me that I should walk the extra 50 metres and use the main entrance. I wanted to crumple onto the floor and have someone scoop me up and take care of me.

But nobody did. The feelings I recall from that moment really encapsulate the darkest and hardest times.

There was the odd incredible nurse or midwife who genuinely seemed to notice and care when I was struggling and of course my incredible family who are without a doubt the reason why I survived any of it at all. Mostly though it seemed assumed that I would be fine. It didn’t seem to be anyone’s expectation that I might be struggling or upset in any way. But I was. Twenty hours a day it was just me, alone with my thoughts. I was overwhelmed emotionally battered, physically exhausted and exposed every day to conditions that would fuel that.

So right now in this moment I acknowledge and validate the struggles I had. And I hope that in doing so maybe I can do the same for you if you have been through something similar. It’s ok for you to struggle – acknowledgement is the first step to finding help.