Today, on World Prematurity Day, I can’t help but think about the weeks in which Eva, Megan and Harry spent in NICU at birth, about the worry, the frustration, and the desperate sadness at leaving the hospital with empty arms, having left in much the same way years earlier. For us, seeing our babies wired up in an incubator, scary looking masks covering their faces, the bleep of machines, the feeding tubes, and a feeling of complete and utter helplessness, that was scary enough. But for others, with babies born far more prematurely, with far greater complications than mine, I can’t even begin to imagine how they get through those weeks, and months, when their babies lie fighting for their lives in an incubator.
This weekend I was up against the amazing Catriona from The Smallest Things, in the MumsNet “Best Campaigner” category. And when she scooped the prize I applauded every bit as loudly as the rest, not one jot of disappointment for my own defeat, because in all honesty, I would have voted for her too. She tirelessly campaigns to raise awareness, help other parents, and change the world, one step at a time.
So I was very grateful when she agreed to share her story with me today, to remind others that for many parents whose babies are lucky enough to make it home from neonatal, it really is only the beginning.
Today, 17 November, is World Prematurity Day. A day to celebrate, remember and raise awareness of the 15 million babies born too soon each worldwide.
For me, World Prematurity Day is an opportunity to raise awareness and increase the understanding of a journey that does not end when you bring your baby home from neonatal intensive care.
My first son, Samuel, was born at 30 weeks with little warning. It was just your usual Friday morning, I was getting ready for work and looking forward to the weekend – and then it happened – my waters broke. Just hours later I had given birth to a baby boy. I had become a mother and yet my baby had been taken away to intensive care, housed inside an incubator where a life support machine mechanically filled his tiny lungs. I had become a mother, but as I left hospital empty armed I felt numb, empty and lost.
The uncertain and stressful nature of neonatal intensive care is not something I would wish upon anyone and people ask me how I managed it. The truth is when your life is suddenly turned upside down by the premature arrival of a tiny baby you have to be strong. There isn’t really any other option. And for the days when you’re not feeling strong, when you’re not sure you can carry on, the neonatal community picks you up, lets you know you are not alone and helps you through the most difficult of times.
It is this support that can disappear though when you leave NICU – “Even our closest friends don’t really know what we’ve been through” I remember saying. You see, friends and family will often think that everything is okay once you leave the unit and the difficulties of NICU are behind you. “Thank goodness that is all over” was a comment I struggled with. When you meet your health visitor they don’t seem interested that your baby was born early or say how happy you must be that your baby is finally home with you.
You missed out on the antenatal classes, missed out on finding a circle of ‘mum friends’. And when you do venture out to mum and baby groups your experience is so very different from anyone else’s that the feelings of grief, loss, anger and jealously begin to surface again.
We know that 40% of mothers develop post-natal depression following neonatal intensive care, (compared to 5-10% of mothers delivering without complication at full-term) and that more than half experience anxiety and symptoms of Post-Traumatic Stress Disorder – and yet the world of neonatal intensive care remains hidden and the isolation and mental health difficulties faced by mothers following premature birth are seldom spoken about.
Today is World Prematurity Day and I will speak about my experiences to raise awareness; but just as the neonatal journey does not end at the NICU door, the importance of raising awareness should not end with World Prematurity Day. That is why I began The Smallest Things campaign in 2014, raising awareness of premature birth and life beyond NICU, making sure that others could find the support they need 12 months a year.
You can read more about Catriona’s Smallest Things Campaign and her incredible journey here.