This is why we are cycling from Auckland to Queenstown and making a film to raise awareness of baby loss. 832. It isn’t the number of miles we will do, it isn’t the number of hours Roy will wear the same pair of pants before he changes them and it isn’t even the number of times puppy Mac wags his tail in the space of a minute.
832 is the estimated number of babies who will die shortly before, during, or shortly after birth in the UK alone during the two months we are away. If that sentence didn’t make you scream, cry or rage please read it again. These statistics do not include all the babies lost up until 24 weeks – we don’t actually have completely accurate data on miscarriage but it is estimated that 1 in 4 pregnancies will end in loss. The numbers of babies lost in the UK alone will be much higher than 832 – I wouldn’t like to hazard a guess. In the US approximately 3,968 will be stillborn during the short time we are away. Globally, we don’t have accurate figures and data collection is inconsistent but these numbers alone are staggeringly high.
So why raise awareness?
The particular way that Lenny died is very rare but babies dying is not rare. These numbers are shocking. Healthy babies dying is a global issue and in my opinion, a public health crisis. The prevalence and the impact for utterly devastated families is simply not matched by global research efforts to bring these numbers down. As bereaved parents, we feel passionately about this but we need others who aren’t directly affected to begin to talk about this. We feel despair that this continues to happen and it could happen to you, your sister, your friend, your family.
Raising awareness can save babies’ lives in a number of ways. It can help parents to feel empowered to ask questions and raise concerns which in some cases could be crucial. Over time it can also bolster funds and research efforts – plenty of medical issues were viewed as tragically unpreventable before science found a solution. The term ‘stillbirth’ sounds like a term from the past and we need to make it a thing of the past – as far as medical research goes – we have barely scratched the surface. Greater awareness can lead to greater understanding and fewer taboos. For bereaved parents we hope this makes this leads to better support and less isolation.
We love cycling, I cycled throughout both my pregnancies and it makes us feel closer to our boys. It helps us to feel we are moving forward (never on). We are facing Lenny’s first birthday, Bhai’s due date and our second festive period in a row where we are supposed to be bringing home a newborn baby and we aren’t – so when we say it is about how we choose to survive – we mean it, it is going to be incredibly hard. Cycling allows you to see the world at a beautiful pace, to be self-sufficient and to travel distances through your own pedal power. We have had our universe shaken, crushed and flipped upside down twice this year – we feel that through adventure we can lean into uncertainty and begin to build confidence in ourselves and the world. It is in nature we feel closest to our boys and we hope that if nothing else – this trip won’t make things worse – (rather be sad on a bike with a tan).
Why make a film?
Based on the available date – if your life hasn’t be directly or indirectly touched by the devastation of pregnancy or infant loss it will be at some point in some form – we need allies to make change happen. We want to give voice to our experiences and to the experiences of so many others to break this silence so people can begin to have more supportive and compassionate conversations.
We are making the film because we have a story about two beautiful boys which needs to be shared with the world. Our story started with Lenny and Bhai but it has become about so many other babies who should be here and they aren’t – some of the names of those babies are on our t-shirts. We will make sure that all who wish to be included are on the end credits of the film. We hope that by telling our story and others’ stories in this way will raise the profile of a hugely important global issue.
Follow our journey on instagram or facebook @lennyslegacy. Please donate to our Go fund me https://www.gofundme.com/f/lennys-legacy-babyloss-awareness if you are able – any small amount will make an impact as ALL funds go directly towards the aims and purposes of the charity. Please note we are self-funding our trip.
And as for the joke about Roy changing his underwear at the start – it is a joke – he is hygienic. But for the non-cyclists among us – people don’t wear underwear when they cycle – it causes chaffing – it is a bare bum on padded shorts situation…….Looks like we have all learned something important today which makes us feel slightly uncomfortable!