Today is especially poignant for me because a year ago today I had my 12 week scan. I arrived at the hospital with a full bladder, and left full of excitement and happiness. Martin and I were mesmerised at the sight of our little baby wriggling around on the screen. We felt so blessed, so lucky, overjoyed. We proudly showed the scan photo to anyone and everyone.
While we knew there was still the 20 week anomaly scan to have to check all was ok with our baby, getting past 12 weeks successfully meant we could exhale, relax a bit, and look forward to meeting our baby in 28 weeks’ time.
Neither of us had any idea that Hugo would have to be born just 12 weeks later.
November is Prematurity Awareness Month. Last November, neither of us had any idea that we would be joining in to raise awareness of prematurity, and to honour Hugo’s memory.
The focus of the awareness month is World Prematurity Day on November 17. I did not know that the day had been in existence only since 2010, such was the level of activity. Yes, I was tuned in to the activity, but there was a lot of dialogue about so many aspects of prematurity, and any awareness raising is positive. Many world landmarks were even lit up in purple to commemorate the day.
During the day, there was recognition of the challenges preemie parents face, with their baby in a plastic box, constant uncertainty and having to ask permission to touch your own baby; a celebration of the babies who made it home; recognition of the advances in medical technology and research that is improving premature babies’ chances of survival; acknowledgement of the difficulties preemies continue to face throughout childhood (and the rest of their lives), whether from winter illnesses that they are often more vulnerable to, or from disabilities as the result of their premature birth; how fortunate we are in the UK to have the NHS, particularly when contrasted with the lower survival rates of premature babies born in the developing world; and the sobering statistic that prematurity is now the leading cause of death for children under five.
The day itself was emotionally challenging for me because of all the preemie parents proudly sharing stories of their children who had made it home. I do not begrudge them their pride – they have every right to celebrate their children, and I know every preemie parent has walked a terrifying road.
I know I am not the only mother of a premature baby who died to have found the day challenging, to have felt like our babies’ stories are less worthy because they have a sad ending. We will continue to share the stories of our inspiring, incredible babies, and seek to chip away at the taboo that still exists about all baby death.
The posts I wrote for the awareness month: A thought for bereaved parents, and Five reasons ALL preemies are completely inspiring both received a good response.
It was the latter post that seemed most resonant with readers: the acknowledgement that every single premature baby is an incredible being, no matter what their outcome. They are incredibly strong, brave, and inspirational.
Various bloggers shared their own stories of premature parenting; to share these different experiences is incredibly valuable.
Ben Wills, a 23 weeker and now a thriving 24 year old wrote this beautiful post about being a baby in a neonatal unit from the viewpoint of his toy rabbit, Edward, who has been his companion since Ben was in his incubator.
Kylie, mum to a premature baby who is now a gorgeous five-year-old boy, now works for Bliss and helps other parents along their journeys.
Mr Boo’s Mum writes eloquently about her beautiful son Boo, who has cerebral palsy as a result of his premature birth, and the joys and challenges of their life. In this incredible post, she explains why prematurity is like The Matrix.
Jennie at Edspire’s post about her twins, born prematurely and now gorgeous four year olds, praises modern medicine, and talks about how we need more research to ensure more premature babies can go home with their families.
Ghostwritermummy Susanne’s beautiful daughter Elsie was born last month at 37 weeks because of intrauterine growth restriction (IUGR). While not technically premature – 37 weeks and over being classed as ‘term’, Elsie was not poorly enough to be in hospital special care, but still needed special care at home. Susanne’s doctors originally thought her baby would have to be born at 34 weeks, and in this informative and moving post she describes her relief at having those extra few precious weeks for her daughter to develop, as well as the frustrations of getting people to understand that a baby born at 37 weeks with IUGR has similar needs to a late premature baby.
The Smallest Things shared 10 things never to say to the parent of a premature baby. If you are a preemie parent you may nod along with the points like I did, and the points are worth a read if you aren’t a preemie parent to help you avoid putting your foot in it, or saying something insensitive.
Thanks are also due to Oscar and Olivia, who kindly shared several of my posts on their site to help raise awareness of prematurity.
A huge thank you to everyone who has read my posts and shared them on social media. Of course, issues around premature birth matter during the other 11 months of the year, too. Please do keep reading, not just this blog but the others mentioned in this post, to help maintain the momentum this month’s awareness has started.