Prematurity Awareness Month – 12 Months a Year!

WPD2014Today marks the end of World Prematurity Month; but for parents of babies born too soon the journey continues.

I have written about World Prematurity Day and what it meant to me this year; an opportunity to raise awareness and increase the understanding of a journey that does not end at the NICU door.

November was a busy month for us and if raising awareness is our aim then our cause has certainly been helped by programmes such as Miracle Babies. The channel 5 series filmed at Liverpool Women’s Hospital invited viewers into the little known world of neonatal intensive care. It provided a unique glimpse into the lives of tiny babies and their families, as well at the staff who care for them. I wasn’t quite brave enough to watch and know that other parents who like us have spent time in NICU also took the conscious decision not to watch as well. Feelings can still be raw even years later and emotions can come flooding back with just the beep of a monitor. What I did watch however was the reaction to the series on social media as well as reaction from the Gogglebox crew. 

Amazing | brave | emotional | I’m already in tears | I don’t know how they do it | I couldn’t cope if that was my baby | so sad | they’re little fighters | and so much praise for the staff and the wonderful work of our National Health Service.

The truth is when you are thrown into the world of neonatal intensive care you have to be strong and you have to be brave – you have to do it and you have to cope. And for those days when you’re not feeling so brave and on the days you don’t feel strong enough to carry on the neonatal community picks you up, lets you know you are not alone and helps you through the most difficult of times.

This support can disappear though when you leave NICU – “Even our friends don’t know what we’ve been through” commented a mum recently. This is true for many people, particularly once you are safely home. Friends and family will often think that everything is okay now, that all the emotions and difficulties of NICU are behind you. “Thank goodness that is all over” was a comment I struggled with. The find that unit congratulate you on you baby gaining weight and say ‘aren’t you happy you’re home’. When you meet your health visitor they don’t seem interested that your baby was born early and your GP is asking if they are smiling when they haven’t reached their due date yet! This is when I turned to Bliss and to their network of volunteers. I needed to find other mothers who understood what we had been through and what we were was still going through; and even now it is those mothers and those in the ‘virtual’ world who I take support from and hope I give support back too.

smallest thingsJust as the journey does not end at the NICU door, the importance of raising awareness does not end at the end of World Prematurity Month. Organisations, charities, staff and volunteers all play their part and this work must continue all year round in order to raise awareness so that parents are supported during their NICU journey and beyond.

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