How I’m learning to be a mum to two babies who are no longer with us

Posted on 10 May, 2024

This year, I established Love From Penny & Lyla, a project to donate love-filled baby loss care boxes to Canberra families.

Our mission is to provide support, comfort and connection to families who have lost a baby during pregnancy or early infancy, and to ensure grieving families know they are not alone.

My hope is that through sharing my story I can tell the world about our beautiful girls, and despite our utter heartbreak they are not physically with us, I can share the incredible love and beauty they have brought to our lives. I hope that this helps others enduring baby loss feel seen, and less alone in their pain. Our entire project is based around the principal of acts of kindness in the name of loved ones who are no longer with us. It’s about sharing love, compassion, and connection with others when they need it.

Late last year I remember sitting at my kitchen table, surrounded by thank you letters and keepsakes of my babies. For a long time I’d pictured the day where I could send out thank you cards with beautiful pictures of my daughter, like the many I’ve received over the years from friends and family.

Instead, I was on maternity leave, with no baby to care for, writing thank you cards to those who had supported us after losing our second daughter, Lyla, in July. I didn’t know how else I could be a mum in that moment, which is what pushed me to start Love From Penny & Lyla.

Our journey to grow our family has been a long and difficult one. Duncan and I now joke that if something can go wrong for us, it will. We are not pessimists by any stretch, but the worst has happened to us – twice. At just about every twist and turn on our journey to have children we have been faced with the worst case scenario. Our journey has included both male and female factor infertility, multiple surgeries and invasive procedures, IVF (some successful, some unsuccessful), miscarriage, pregnancy complications, and finally, neonatal death.

When I reflect on all that we have endured over the past few years, and on the loss community I’m now both incredibly lucky and unlucky to be a part of, I realise that our story is not unique. Perhaps the combination of the experiences we’ve had makes our story less common, but the experiences we’ve had are also shared by so many others, often quietly, privately, which breaks my heart. I’ve connected and found comfort with so many incredible parents through this community, and it’s my hope we can reach out to those who come after us.

Our first daughter, Penny, was born at 13+4 weeks, in the emergency room toilet. I was completely shocked, I knew what was happening but I couldn’t quite believe it – how could this be happening? We were terrified and had no idea what to do, what to ask for.

The staff were lovely, but clearly had no idea how to deal with us or quite how to handle things – there were failings at every step, and I look back now with regret and anger. We never saw or held Penny, and we didn’t know her gender or give her a name until some time down the track.

Losing our daughter was treated as a clinical occurrence. We left hospital with no baby, no support, no keepsakes, and no follow-up. I didn’t feel like a mum. For a long time, Duncan and I felt cheated, angry and as if we were ‘too sad’. It was an ‘early’ loss, after all, ‘just a miscarriage’. Cue eye roll and angry face here.

After another couple of embryo transfers, I became pregnant with our second little girl, Lyla. We were elated but terrified. The stress and anxiety in the background took the shine off what should have been a magical time. It was difficult to feel positive, and I think I never quite believed that we would bring a living baby home – it was always too good to be true. That’s another thing I’ve been robbed of – I used to be a half-cup-full kind of person, and I still am, but I wonder about the empty half and when it’s going to hit. I’m constantly waiting for the other shoe to drop, the floor to drop away beneath us.

I had a complicated pregnancy with Lyla, and at 20 weeks we found out she had a serious heart condition. Nevertheless, we expected to carry Lyla as close as possible to term, and she would need surgery after she was born. We elected to have an amniocentesis test as our specialist was concerned about a serious chromosomal or genetic issue, so for a little while we were agonising over the result – would we be able to keep Lyla or would the results of the test mean that she would live a life of pain and suffering?

In the end, Lyla made her entrance before we received the results of the test – perhaps her way of saving us from being faced with a heartbreaking decision.

I remember distinctly the moment that I knew that we would not be taking our baby home with us. I was sat in the armchair, in our birthing suite, Duncan pacing around the room. Our doctor gently explained that in some cases there may be interventions that could delay birth, and provide a few extra days in which to give medications to speed up the development of baby’s lungs to give her a better chance, but not in our case. Due to Lyla’s serious heart issues, she wouldn’t survive after birth.

A thousand questions were racing around my head as I started to grasp what was going on. Surely this wasn’t it; surely something could be done? Even if it had a slim chance of working, we would do whatever it took. But he assured us that no, there were no options.

He had already called our cardiologist who confirmed that the surgery couldn’t be done before 27 or 28 weeks, and there was no way to delay the birth for that long. It was final – our daughter would be born, and then she would die.

We had two brilliant, caring and gentle midwives, and I will be forever grateful for them. I was not at all ready for it, but they helped bring Lyla into the world, at a time when I felt like my body had failed me, again. I didn’t trust it in the slightest. Despite the birth not being the empowering, beautiful, rite of passage that I wanted for so many years, I am proud, and somewhat shocked, about how I got through it.

Our beautiful Lyla was born at 10.19 pm on Monday 17 July 2023. She was such a little fighter and survived the birth. Our midwife passed her to me, and the moment I saw her, held her, everything changed. I can’t explain it other than to say became a new person in that instant.

Nothing else mattered in the world except her. Her perfect face, her perfect fingers, toes, lips. Her perfect skin, eyebrows, and perfect ears. The moment was here – after years of aching for this, I was finally a mum. In that moment it hit me – the reason for my existence was to be her mum.

We’re not exactly sure how long Lyla lived for, perhaps around only half an hour or less. In that precious time I tried my best not to cry, to let her feel only our love and happiness. In the short time we had with Lyla, I felt the deepest love I could imagine, the deepest gratitude and pride that this little human was ours. I kissed her tiny head and face, hands and feet, whispered to her how much I loved her and had waited for her. She was so tiny, but so mighty. How could such a small person bring such pure, soul-altering joy and love, and in such a short time leave such a giant, unfillable hole?

The following weeks were a blur – funeral planning, grief, phone calls and texts, flower deliveries, a house full of family, having to drag myself out of bed and just survive. On top of that, I’d just given birth so my body was different, it felt foreign and I was simultaneously furious with it and proud of it. Regardless of whether you have a living baby to bring home, your body still changes, it makes milk, loses hair, gets emotional.

The night before Lyla’s funeral, we brought her home. Our house was filled to the brim with our family. Duncan’s beautiful parents had jumped on a plane and made the big journey out from Northern Ireland, my parents, and my sister, her husband and our gorgeous two-year-old niece all came to stay with us.

Spare rooms were filled, the outside table and chairs were brought inside so everyone could fit around it, food was prepared and stories shared. Although everyone was worried about overwhelming us and intruding on our time with Lyla at home, it felt so magical and natural to have everyone there, to have a house full of love and support. We wanted Lyla to be surrounded by her family, those who loved her most. In some way I wanted to send all of that love for her through her little body back to her soul, wherever she was.

Now, as I deal with my first Mother’s Day feeling like a mum, I reflect on what I’ve learnt and how I’ve changed. What has grief done to me? It has profoundly changed who I am and how I see the world. I want to be a better person, for them, and I want to support others going through baby loss too.

Love From Penny & Lyla is a way to share our babies with the world, to make sure their memories live on, and in a way, to parent from afar. It’s a small comfort to be able to pass on the love that Penny and Lyla have brought to us, to others who need it in their darkest hours.

The Luca Box, designed for early loss pregnancy.

We have partnered with the Canberra Hospital Foundation, which allows us to focus our efforts on fundraising, and the most important job of putting together care boxes to go to local families.

100% of the funds donated through the Penny & Lyla website go directly to putting together care boxes. The Canberra Hospital Foundation supports patients and families in the ACT and surrounding region, who attend any public hospital or health centre across Canberra.

This will help us get the boxes out to people when and where they are needed. We also have some incredible partnerships and support from local businesses which helps in our goal in providing as many of these care boxes as possible.

More information on the Love From Penny & Lyla project and our care boxes can be found at on Instagram and Facebook @lovefrompennyandlyla, and our website canberrahospitalfoundation.org.au/love-from-penny-lyla.

Donations can be made on our website, and details of more fundraising events will be shared in time. There is the option for those who donate the value of a box, to do so in memory of someone special. The demand for these care boxes is huge, and the supply still small – every donation counts.

Thank you to the wonderful Canberra community for your support so far, and for your support of the families who will sadly walk this same path in future. I look forward to growing this project with you.