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.
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.
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.
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?