Stepping into a Neonatal Intensive Care Unit (NICU) or Special Care Nursery (SCN) for the very first time is emotionally overwhelming and incomprehensible, especially for first-time parents. Watching your baby’s tiny chest inflate with each breath they take is a powerful reminder of the fragility of life. To experience your premature baby wrapping their tiny hand around your finger and being fearful of touching their translucent skin as you may hurt and bruise them is simply heartbreaking. For parents, learning to breathe in the NICU air is emotionally challenging, to say the least.
Premature birth changes you as a parent and is an influencing factor of your transformation into the person you are today. It is heartbreaking and frightening but also overwhelmingly beautiful with each morning being celebrated as a new milestone and the chance to visit your baby. One of the most distressing moments for any parent on this journey is when we must leave the hospital to go home without our baby for the very first time. It feels painful and wrong on a physical level, yet, no matter how many times you leave them behind whether it’s over the course of a few days, weeks, months or even years, it never gets easier. In fact, it gets harder as time goes on because your baby feels more like your baby as you become more involved with their cares. Regardless of the years passed, this will always be a vivid and tearful memory for parents.
How do we cope as parents? We are given lots of love, support and comfort from family and friends but we also start chatting to other parents whether it is in the expressing room, whilst sitting next to our baby or on social media. For most of us, we never knew such a community ever existed until we were thrust into the NICU roller-coaster. When you start searching on the internet for support groups, you also find yourself vigorously searching for photos of babies born at the same gestation as your own. You quickly realise that you are not alone which is comforting. The premmie community quickly becomes your beacon of light, hope, inspiration and offers you a sense of stability in an otherwise unstable roller-coaster ride of emotions. L’il Aussie Prems Foundation was my community and I honestly do not know where I would emotionally be placed now if it wasn’t for the kindness and support from the parents in this community 10 years ago.
Premature birth is a topic that is slowly gaining strength thanks to social media offering the community an incredible opportunity to do this with a reach that was once unobtainable many years ago. Dialogues can be easily started by any parent or organisation to highlight the trials and hardships that families face after an early arrival through stories being shared and images. Social media platforms also offers parents in the premmie community a platform to thank the medical teams who worked tirelessly to try and save the lives of our children, share their personal struggles and experience from their own unique journey in the L’il Aussie Prems Foundation support group, and to also give thanks those who loved and supported them during one of the hardest times of their lives.
Over 26,000 babies in Australia and over 15 million worldwide breathe in NICU air each year and heartbreakingly, over 1 million of these precious babies sadly lose their fight for life from preterm birth complications. To put it simply, premature birth changes you and changes the lives of those around you so how did your family cope after being thrust into the world of prematurity?
“From such small beginnings, premature babies overcome overwhelming circumstances, ones that we can only marvel from the sidelines.”
– Julia Toivonen
(mum to ex 27 weeker and volunteer in the premmie community for over ten years.)