Tomorrow, November 17, is World Prematurity Day.
The day is an opportunity to raise awareness that every year in the UK, around 60,000 babies are born prematurely (before 37 weeks’ gestation). That is one in every 13 births – and the number is increasing.
The day is an opportunity to raise awareness about premature births, the battles premature babies face, the support their parents need, and about the urgency for more research into preventing premature births.
The day is an opportunity to celebrate the preemies who have grown into children enjoying their lives.
The day is also the opportunity to recognise that premature birth is now the leading cause of death for children under the age of five.
It is this last point that I would like to focus on, and how difficult awareness raising for World Prematurity Day (WPD) can be for bereaved parents of premature babies who did not make it home.
Hugo
The lead up to WPD has involved lots of activity on social media, including messages about the issues outlined above.
Much of the activity includes success stories: the premature babies who made it home. These success stories often include a collage of the baby’s journey: just born; getting bigger; first photo at home; and a photo of them riding their bike or posing proudly in their school uniform.
These stories are wonderful: I do not mention them out of resentment. I know these parents will have had their own share of terrifying moments, will have come close to having to make difficult decisions, and they are immensely grateful that they were able to take their babies home.
The reach of preemie success stories can lead to a perception that all premature babies live happily ever after. Sadly, that is not the case, as I outlined in Five Reasons ALL Preemies are Completely Inspiring.
The media helps perpetuate this myth, with stories of ‘miracle’ babies, babies who defied all the odds after suffering every possible complication, infection, intervention and operation to return home. What people tend to forget – or ignore – is that these stories are newsworthy because they are unusual, and extraordinary in the true sense of that word – they are out of the ordinary.
My son Hugo was born at 24 weeks. Little Hugo Boss the feisty fighter sadly succumbed to chronic lung disease aged 35 days. In amongst the intense feelings of sadness and heartbreak of losing my much-wanted baby, I have felt a sense of failure because Hugo was not a celebrated success story.
Me and Hugo
Since Hugo’s death in March this year, no day has gone by where I have not written about him, or mentioned him on social media, or in real life conversation. I have taken advantage of including his story whenever there is an invitation to talk about premature babies.
Sadly, there is an imbalance between the success stories and the stories of babies like Hugo. This imbalance means the casual observer could be forgiven for believing all preemies do go home.
Death in general and baby loss in particular remains a taboo. I get that – babies dying is an awful thing to think about. The success stories give the reader a warm and fuzzy feeling that the stories about the babies who did not make it home lack.
The trouble is, as another bereaved mother of a preemie recently observed, “…around WPD it feels like all you see are the successes so it makes your loss feel even more unusual.” It can lead to a further sense of isolation, that our babies are somehow less worthy, that our stories are not wanted.
I wonder whether that is why comparatively few bereaved parents come forward with their stories. If that is the case, it is terribly sad: all babies are amazing, and in particular all preemies, whether or not they go home, fight a hard, inspiring battle.
As part of WPD, we need the conversations about research into preventing premature birth. We need the conversations about how advances in medical technology means better outcomes for babies. We need conversations about the support babies and their parents need, during and after their stay in hospital.
We also need more conversations about the babies who do not make it home. To make sure we give an equal platform to celebrating their lives. To make sure the parents of the babies who did not make it home have a voice. To help those parents get the support they need in their grief.
Hugo Boss
More focus is also needed on that saddening statistic, of prematurity being the leading cause of death in children under five. We need more conversations about the babies who do make it home, only to die some time later of complications resulting from their prematurity.
On their Facebook page, the March of Dimes invited parents to share stories of their babies who died. Some of these babies lived for mere hours, while others held on for days, weeks, and months. Some even made it home but still died. I have read many sad stories in my life, this year particularly, but this story is so tragic it took my breath away:
My daughter Martina born at 24 weeks due to previa, PROM, and partial abruption. Severe BPD but after 5 months at the NICU and surviving 3 pneumonias, 2 sepsis, she finally went home from the hospital doing really good. Only to die the next day due to SIDS. Still trying to figure out how this could happen. When we thought we were out of the woods and were finally going to be able to enjoy her at home…
(Note: ‘previa’ is placenta previa, also known as a low-lying placenta; PROM is premature rupture of membranes; BPD is bilateral pulmonary dysplasia, or chronic lung disease; SIDS is sudden infant death syndrome, or cot death.)
Tomorrow, I shall be wearing purple in recognition of ALL premature babies.
What are you doing to mark World Prematurity Day?
Headspace Perspective 
Thank you for sharing this. As one of the lucky ones who has never been through this, I was unaware of the statistics. You are doing an amazing job of raising awareness through your own heartbreak. X
LikeLike
Thank you. It’s for all premature babies, whatever their outcome, but especially giving a voice to the babies who did not make it home like my Hugo xxx
LikeLike
Thinking of you and Hugo particularly today Leigh – World Prematurity Day should be about raising awareness of all premature babies and their families. You do so much to raise awareness and keep Hugo’s memory alive – your beautiful boy has touched the hearts of so many through your blog. Sending you love and hugs xx
LikeLike
Thank you Louise, people thinking of Hugo really does mean so much to me. Thank you as ever for your support and kindness xxx
LikeLike
I’m thinking of you today, and I also want to tell you something stupid.
Because of reading your blog, whenever I go into McDonald’s I make sure to give S all the change from my purse to put into their charity box. They have a really exciting one where the money goes around and around and around in a big spiral, and she loves it.
It had never occurred to me before reading your blog, what their charity was all about. But now I know and I think of you and Hugo every time.
You have achieved a lot since March, Leigh. Your blog is the first place to which I (and I’m sure a lot of others) direct anyone dealing with baby loss or prematurity. You’ve raised a lot of awareness and should be immensely proud of that x
LikeLike
That’s not stupid at all, that’s lovely. All that change helps parents stay close to their baby or child while they are in hospital – it is vital. I never really thought what the charity was all about until I needed it, but we are so indebted to them for being able to stay close to Hugo.
Thank you for your kind words. I really can’t believe the reach my blog has had. I’m so grateful for everyone’s support, it really does mean so much xxx
LikeLike
Thank you for this. I’d been planning on burying my head in the sand in order to avoid the success stories, but you have helped remind me that when I do that, I perpetuate the myth that all – or even most – NICU babies get to go home. The world needs to know that prematurity is still dangerous. Thank you!
LikeLike
Bless you. We do need to celebrate all premature babies, but you do whatever you feel comfortable with. Hugs xxx
LikeLike
I completely agree with your thoughts in this post. As a so-called ‘miracle baby’ I’ll be recounting my story tomorrow, with a typically British uncomfortable embarrassment, in the hope that it will inspire and educate. When I say educate, I think this is where the crux of the matter lies, the reason why ‘miracle’ stories dominate, aside from the feel-good factor. WPD is about raising awareness and one of the most important things that this involves is to make people realise that extremely premature babies can survive and live full lives, that they are not lost causes; this is what my story aims to do. But this can become a narrow stance to take as regards raising awareness as a whole, as you rightly state, and I often feel a touch guilty when thinking of the tens of other ‘potential me’s’ who did not survive to tell their stories, stories which are equally, if not more, important when it comes to raising awareness of premature birth in order to do something about it. Equally, awareness should not stop with the babies themselves, if the lucky few are miracles then we most definitely need to sing the praises of the miracle-workers: the doctors and nurses; the researchers; the parents; the families. They really deserve the recognition.
But there is a need to go beyond recognition and talk about action; to do this we first need to hear all stories around the struggles of premature birth for babies and their families, not just those with happy endings. Stories celebrating the potential for success highlight the possibilities, they give hope, but the equally inspiring (if not more so) stories of valiant efforts cut short highlight the probabilities, they intensify the crucial perception that action is still needed. Research is one area where this is always the case; I was lucky to receive a new drug on clinical trial just before delivery. But the causes of premature birth are still poorly understood, there are many more questions than answers, something I learned from working in a science lab trying to find these answers.
Medical technology and scientific research are making progress, more babies are surviving, or rather we are getting more babies to survive. But after that, are we properly looking after them and their families? This is becoming a greater issue, but it is one that is often not considered when thinking or talking about prematurity. In the last five years of WPD has done great work in raising awareness of the fact that premature birth is more common than you think, and that it is survivable, but now it needs to be remembered why this is remarkable in the first place. WPD is about all premature babies and their families, about how we can act to improve the experience of future babies and families, about the reasons why we need to improve.
I am in the privileged position of being able to contribute to these improving actions, but please do not mistake this for normality. I am very lucky to be able to stand up and shout about premature birth, and tomorrow I shall be doing just that for all those who were like me and who deserve to be heard. Their voices make action possible, action that might eventually create a future where their experiences will be the unusual ones and not those like mine. My voice might be inspiring, but theirs are life-changing.
LikeLike
Thank you Ben for your eloquent comment. I’m delighted you’re a miracle baby, and have grown in to a healthy young man (I hope that doesn’t sound patronising!)
I completely agree with you, success stories are vital to demonstrate that their cause is worth it, not least because these things too often come down to funding – for the care and the research.
Research is crucial: even 10 years ago I might not have had even those 35 precious days with Hugo. Hopefully, in 10 years’ time a baby like Hugo may be able to recover from chronic lung disease, and go home. That would be wonderful.
You’re also right in that all the staff are the unsung heroes – I am forever indebted to all the staff who cared for Hugo.
Thank you so much for using your personal experience and your voice to strive to generate further awareness for WPD and all issues around prematurity. Of the research that is needed, of the battles babies face, of the support many babies and children need after hospital (and that many struggle to get), of the success stories and the babies who don’t go home. Hugs to you xxx
LikeLike