My husband Zane, family and friends of ours have decided to take part in this years Autumn Wolf Run in memory of our baby girl, Ophelia Storm Murray and raise money for the Lily Mae Foundation. 

The Wolf Run is Wild Running - a unique combination of three kinds of off-road running: mud runs, trail runs and obstacle runs. It is an epic challenge across raw natural terrain, including open ground, woodland, lakes & thick mud. 

Our Story

Me and Zane had been trying for a baby for 2 years, having had two losses in 2020, we were ecstatic when I found out I was pregnant during the autumn of 2021 and getting to the ‘safe point’ of the 12 week scan where our little baby was bobbing around on screen with a healthy heartbeat. At my 20 week scan in March, we found out that our unborn daughter had fluid around her lungs, otherwise known as fetal pleural effusions. We were scared and googled all possibilities before our appointment with a consultant who arranged genetic testing and referred us to Birmingham Womens fetal medicine for a detailed heart scan.

We decided to continue our care under Birmingham Womens fetal medicine department as they had the knowledge and capabilities of being able to intervene with this fluid around her lungs. We had several appointments every single week, hoping the fetal pleural effusion would just go away. We were always in limbo, never having a certain prognosis and just holding on to hope.

We found a cause for the fetal pleural effusions which was diagnosis of Noonan syndrome, a genetic condition that has other characteristics which wouldn’t be certain until birth and beyond. These could have included heart problems, learning difficulties, facial deformities and failure to thrive. Although we were devastated, it didn’t matter to us that she had this genetic condition as we knew we had the capabilities to be able to care for her so we decided to go ahead with every intervention we could to give her a chance. 

I had several procedures to try and get this fluid from around her lungs gone. Several drains were done through my bump and then through her chest with a needle and syringed out. I also had my amniotic fluid drained as my waters surrounding her were too much and this was a concern that I would go into preterm labour and my body was looking and feeling more pregnant than I actually was. We also had a shunt procedure where a small tube was put through her chest so the fluid could continuously drain into my amniotic fluid. These procedures came with risks themselves but we wanted to proceed to give her little lungs a chance to expand and grow each week. 

 Unfortunately, the procedures were unsuccessful and the fluid came right back and as she grew, the amount grew too. We always expected her to be extremely poorly when she was born due to this fluid not going away, not knowing how her lungs had developed and if she would be able to breathe even with help, as well as the other unknown complications of her genetic condition. We had meetings with neonatal consultants to tell us what to expect in regards to intervention at birth and a long stay in NICU but always being told there was a high likelihood that she may not survive. 

From 29 weeks, she developed fetal hydrops, where fluid had accumulated in more than one part of the body, in this case it was skin odema which was swelling under the skin, mainly around her head, neck and about 1cm over her body and this diagnosis has a survival rate of 20%. We were devastated that things just felt like they were getting worse and I had to accept that it was more likely that I was never going to bring a baby home.

Our world collapsed when I went into preterm labour at 32+4 weeks and on the 27th May 2022 at 17:57, Ophelia Storm Murray was born by emergency c-section. The neonatal team did everything they could to save her but our baby girl died shortly after in our arms. 

It is every parents worst nightmare to lose a child but unfortunately we found ourselves living it, knowing this was maybe an eventuality, but never being prepared for devastation of losing a much wanted and loved baby girl. 

In hospital, we got taken to a special room where we got to spend some time with Ophelia as a family and we received a memory box from the Lily Mae Foundation. Inside we had sets to make hand and foot prints, a box to put in cut of her hair, matching teddy bears, a book and other tools we used to make memories with after she passed. 

We also received a sibling pack for our daughter Myla-Fox, that contained a book that matched her experience as a sister that has lost a baby in her family, a worry doll, an emotions journal, a notebook and some colouring pens. We were so grateful to receive these at our darkest time and wanted to give something back to this charity and help the families that need their support. 

We have already raised over £500 from Facebook posts and donations at her funeral, but we wanted to raise even more to help families who will go through the utter devastation of losing a baby and know that they will be able to make the same precious memories with their baby son or daughter. We wish we never had to think of other people in our position, no parent should ever lose their baby but we hope that those memory boxes bring a little comfort to them like it did us.

As well as these memory boxes and sibling packs, the Lily Mae Foundation offer support through counselling, podcasts, support groups and days out. I know all too well how isolating losing a baby has been and hope that shedding a light to this charity can help others if they ever find themselves or a loved one in a similar position. 

We are happy for our story to be shared, talked about, her name to be spoken and her memory to be honoured, I’ve always been one to want to break the taboo of baby loss and even more so now so I’m beyond proud that these beautiful humans in our life are doing this Wolf Run to raise money and to help parents and siblings to make a heartbreaking time in their lives a little more comforting

 Thank you so much 

Xxxx

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