Welcome to the latest addition to the It Still Takes a Village – Working in Baby Loss Interview Series where we take a closer look at those who dedicate their day to day to preventing baby loss and supporting those affected. You can read more interviews, here.

Many charities in the world of baby loss are set up following the heartache and grief someone experiences from loosing their own child. Often, the aim is to fill the gap of what was missing at the time of loss and working hard to ensure that no other family also misses it. I’m delighted to share the story of Upon Butterfly Wings and its founder, Lucy. 



So, to start us off, please can you let us know a little about your current role?

Hi there. My name is Lucy Willis and I am the founder of Upon Butterfly Wings (UBW) which I originally set up in October 2011; 2 years after my son Bobby was born sleeping at 22+2 weeks due to pPROM and an umbilical prolapse. I work full time in London within an engineering male heavy environment where my husband also works. We have a four year old daughter together (Bobby isn’t my husbands) and a tortoise, so UBW is run by little old me, from our house. The majority of the emails and calls are made while on the train to and from work while the bulk of the sorting and posting out is usually done of an evening, once she’s in bed or on a weekend when the football is on!


What are you currently working on? Is there a particular project or aim that you’d like to share with people.

It will always be about making contacts with the hospitals, mortuaries and funeral homes around the UK to supply them with our items. On the side-line I have this week, been speaking to SANDS and I’m happy that UBW will be joining their Baby Loss Awareness Week campaign in October. Not only will we will be selling their official awareness pins but we hopefully have a few exciting things happening around my local area; can’t say until I’ve had confirmation sadly. Another thing in the pipeline is working towards being the sole supplier to a chain of funeral directors within all of their southern branches.


“Back in 2010 the idea that you could dress micro preemies – who were not alive nor in the neonatal unit – wasn’t something the hospitals had ever considered.”


What motivated you to do the job that you are doing now?

In all honesty I offered to help out some friends for a project they were starting back in 2010 but only myself and another had lost babies; so they wanted some ‘knowledge’ in that area. The project took off quicker than we could keep up with and I ended up co-running it along with four others. Back in 2010 the idea that you could dress micro preemies – who were not alive nor in the neonatal unit – wasn’t something the hospitals had ever considered and so we initially had a lot of No’s and a lot of explaining to do to try to talk them round to it. Within three months there were over 15k likes on the Facebook page and over 40 hospitals on board. I don’t think I’m wrong in saying that the emotional toll and the amount of time and effort was the main reason led our group parted ways. But being stubborn, I didn’t want to waste my contacts nor my time and effort that I’d already invested in this. Plus, I was already donating to the hospital that Bobby was born and it gave his death a sense of reasoning, so I decided to start UBW and here we are today.


In what ways does your current role allow you to get involved in the baby loss cause?

UBW is most definitely on the ‘support’ side of the community and I’m very happy with that. There are many, many amazing other groups/non profits/charities who spend every moment of their day to raise awareness and find ways of prevention. I enjoy speaking to all different sides of the network; hospitals, groups, parents, those who knit, sew and crochet for us etc but it also allows me to take a step back should my mental health need it. It’s taken a few years to find a healthy balance and to realise that one single person cannot change everything; we all have our roles for a reason.


What are the biggest frustrations or constraints that you face in supporting those affected by baby loss or preventing baby loss in the first place?

Being a non-profit and not a charity has definitely hindered some of what I would have liked to have done over the years. If you are a charity, you are taken more seriously but it’s not always possible to get that status; especially for me with a full time job and family. Back in 2010-2012 the biggest frustrations were trying to ‘sell’ this idea to the hospitals but that has become a lot easier now that there are so many others doing the same. Infact, it’s now really hard to find somewhere which isn’t inundated with donations; which is when you need to use your contacts and knowledge to find other ways to get in there, so to speak.


“It’s taken a few years to find a healthy balance and to realise that one single person cannot change everything; we all have our roles for a reason.”


Do you think that Baby Loss is still a taboo, and if so, why? Do you encounter issues with it being a taboo in your day to day work?

In 2018, personally, no I don’t think it is as taboo as some would think it is. But then I’ve always been very forthcoming with my son dying and I am a very matter of fact person, so maybe others don’t get a chance to be flustered with it. But from when Bobby was born in 2009 to now, awareness has definitely improved. I have no issues when speaking to the bereavement services. Even those in the media at the knitting/crochet magazines are very forthcoming about advertising for us, which is fab.


Who else do you work alongside in terms of baby loss support or prevention? Are there any charities that support you, or perhaps a colleague that you couldn’t manage without? 

I don’t have any ‘colleagues’ but my mum has been a huge support since day dot. She’s currently knitting up some items to sell in preparation for the Awareness Week and she’s always been there for technical help and to listen to my frustrations. The baby loss world has changed dramatically over the years; mainly for good but sometimes not so good. There isn’t one charity or organisation that I work alongside with but I do like to make UBW known to anyone who will listen. UBW like to put our fingers into a few pies at a time so to speak, as we help First Touch to fill their memory boxes for the babies who sadly die in the neonatal unit at St Georges, Tooting and as I said previously, I’m currently working with a lovely lady at SANDS for the awareness week, along with a few others. I would like to shout out to Cathy who runs the amazing Heart in Their Hand. I ordered from her some gorgeous keyring’s which are being donated to Lewisham Hospital in memory of Bobby for his recent 9th birthday. She’s been really friendly and down to earth since day dot and her work is amazing and unique.


When the job is hard, what one thing reminds you to keep on keeping on? 

I always go back to the 45 mins I held Bobby in my right arm in the chapel and noticed that he was dressed in a tabard and wrapped in a fleece blanket. It was something that I’d not even thought of and I will forever be thankful to the partner of Lewisham’s Mortuary Assistant for making my son these items and the comfort that they bought and that it exactly how I want all future parents to feel when they hold their babies for the last time. 


 “You need the passion and drive to get it off the ground and then the motivation and support to keep it running.”


We are in a shift change with the understanding and awareness of baby loss. What would you say to someone just starting out in a job associated to baby loss?

It’s a tough, emotionally draining and can be very expensive to run. You need to treat it like you would a high street business; you need the passion and drive to get it off the ground and then the motivation and support to keep it running. Be prepared to work hard but to also feel amazing when that breakthrough comes and everything suddenly slots into place. Network. Don’t be competitive and don’t think that you are bigger or better than another as all groups/non-profits and charities started with the same passion and need for change. Don’t do it to get an award, do it because that need is there within you. Think back to how you felt when it happened to you and use that to keep you balanced.


It’s likely that a newly bereaved parent is reading this. What would you like to say to them?

Being 9 years down the line I try to stay away from giving out advice as I remember being given advice and thought that everyone further on from me was patronising. All I can say is that it will change you as a person and that’s ok. You will cry so hard one night that you feel as though your heart is going to stop; that’s normal. You will be amazed at how quickly it becomes a part of your life but it doesn’t have to be your all and consuming life. You will wake one day and smile and you’ll feel crap about it but then the smile will become a daily thing. The guilt will still stay but you won’t hate yourself as much as you once did. It is not your fault. Talk. Talk. Talk. I wasn’t very good at that and that’s one reason I’m not longer with Bobby’s Dad. There are so many organisations and groups out there full of women and men who you can talk to but don’t forget to speak to the people in your ‘real life’ too. If someone asks you how many children you have, tell them. It is not your fault if it makes them uneasy. If you are lucky enough to go on to have another baby; it will not be a ‘replacement’ but you will be amazed at how easy it is to love both of your babies, equally, just differently. And don’t be afraid to use your newly found passion to make a difference to someone else’s life, be it small or big, use it while you still have it.


We have some ambitious targets for baby loss currently in the UK. What are your specific hopes for the future in terms of maternity and baby loss?

Well of course everyone wishes that babies no longer die but we are a long way off that still for all different reasons. My own personal wish is that no parent feels the way I felt or has the regrets that I did. I wish for it to be mandatory to have photos of and with your child. For all of the babies to be dressed, wrapped or placed into a garment which brings a sense of ‘normality’ to them and the situation the parents face themselves in. For no parent to leave the hospital with a brown envelope full of literature about miscarriage, when you’ve spent over 24 hours giving birth. For the terminology to be changed; my son wasn’t a spontaneous abortion at 22 weeks gestation. That was a kick in the guts. For all medical staff to not give out advise – no matter what their personal belief – like ‘don’t worry you can have another’ less than 10 mins after you’ve been told that your baby has died. To be given advice on how to arrange a funeral or cremation/the costs/the legal side of it etc etc. For the pre 24 week gestation babies to be treated as humans just as much as those post 24 week are by UK law. It’s all common sense when you read it.


Thank you so much for taking part in this interview series. Lastly, before we finish – Is there anything else about you or your job that you’d like to let people know about?

UBW are always in need of volunteer to help dress the babies so if you would like to help, or if you are a parent or work within the bereavement field, we can be found on our website www.uponbutterflywings.org.uk, over on Facebook, Instagram and Twitter. You’ll be surprised how much we do if you look.


To continue to follow Lucy and Upon Butterfly Wings, visit the below

Facebook | Website | Instagram | Twitter


it takes a village

This blog post is part of an ongoing spotlight on those working in baby loss. To read more from It Still Takes a Village series, visit the hub page here.


One thought on “Using a Newly Found Passion to Make a Difference to Someone Else’s Life | Lucy, Founder of Upon Butterfly Wings for the #ItStillTakesAVillageBlogSeries

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