As parents who have journeyed through the NICU, there’s a bond that ties us to a shared experience of fear, hope, and resilience. NICU Remembrance Day holds a special place in our hearts, not only because we survived it, but also because it’s a time to reflect on the heartbreak of those who didn’t get to bring their baby home. It’s a bittersweet moment of deep gratitude and profound sadness, a complex mix of emotions that only those who have been there can truly understand.
Before our daughter Amelia was born, we were gently warned about the meaning behind the purple butterflies we might see on the walls and doors in the NICU. These butterflies are a symbol that a baby has passed away. Knowing this beforehand didn’t make it any easier when, just three days into Amelia’s NICU journey, I saw those purple butterflies around us. It was a stark reminder of the fragility of life, and it filled me with both sorrow and a deep sense of gratitude. While our baby was fighting for her life, others were already saying their heartbreaking goodbyes.
For many parents, the sight of those butterflies forever changes your perspective. We carry the weight of knowing that, while we were able to take our baby home, some parents left the hospital with only memories. That awareness never leaves you. It’s this profound reality that inspired the logo for “The Good, The Bad, and Your Parenting Journey” podcast, which features purple butterflies. They serve as a tribute to the babies who gained their wings far too early, a symbol of remembrance and respect for those who couldn’t bring their baby home.
One of the most heart-wrenching moments of my journey came when I was discharged from Southampton’s NICU while Amelia continued her care in our town’s special care baby unit. When I arrived at the postnatal ward in Worthing, I saw a poster on the wall with a purple butterfly. It explained that, if twins were born and one didn’t make it, a purple butterfly would be placed in the cot with the surviving baby. Seeing that poster completely broke me. It brought me full circle because, 43 years ago, my own twin brother passed away at birth — he was stillborn. I should have had a butterfly with me, but things were different back then. That moment shattered me, reminding me of all the losses parents like me endure, both now and in the past.
This also connected me back to my own birth. I was born at 28 weeks during the early days of neonatal medicine. Back then, the chances of survival were far slimmer than they are today. The medical advances that helped save babies like Amelia didn’t exist when I was born, and certainly not when my brother was. Realising how far neonatal care has come in the decades since brings a mix of awe, gratitude, and sorrow for the babies we still couldn’t save.
In moments like these, organisations such as Sands (Stillbirth and Neonatal Death Society) provide vital support. They help families navigate the unimaginable grief of losing a baby and ensure that those babies are remembered with love and dignity. Sands plays a crucial role in raising awareness, supporting bereaved parents, and helping us honour the little ones who couldn’t stay. Their work has brought about meaningful changes, like the introduction of purple butterflies and the ongoing support for parents through their journey of grief.
NICU Remembrance Day is not just a time of reflection but also a day to honour survival, healing, and community. It’s a chance to come together, to remember every baby’s story, whether they are still here with us or live on in our hearts. It’s about recognising the strength of every parent who has walked this path, whether their journey ended in joy or unimaginable loss.
As parents who survived the NICU, we live every day with immense gratitude. But on this day, we also feel the weight of the grief that surrounds us. To the parents who couldn’t bring their baby home — we see you, we honour you, and your baby’s memory will forever be a part of us.
The purple butterflies we wear are a powerful symbol of love, loss, and the strength to carry on. We stand together to remember the good, the bad, and the deeply emotional journey of parenting in the NICU.
References:
– Sands Charity (Stillbirth and Neonatal Death Society)
– NICU Remembrance and the Purple Butterfly Initiative
– Personal experiences from parents of premature babies and NICU staff
The bad and your parenting journey 