Luna’s story
I found out I was pregnant for the third time in August 2024. My first pregnancy had ended in a very early loss, and my second had resulted in a little boy, Jesse, who was 14 months old at the time. After my first experience, I found the early weeks of pregnancy the toughest, but as the weeks ticked by, I started to take it for granted – we’d be welcoming a sibling for our little boy.
The pregnancy was going almost perfectly – a straightforward 12-week scan, low-risk screening results, and two separate scans at 20 weeks as the baby wasn’t in the right position for their head to be measured the first time around. Nothing of any note was found. As a novelty, we found out the baby’s sex early, at around 13 weeks – we were having a girl. I had a uterine artery doppler at 23 weeks, as I’d been flagged as having low PAPP-A after my 12-week bloods were taken. The doppler itself was fine, but at this point, the sonographer retook the baby’s measurements and this time, her femur length had dropped below the 3rd centile. In my follow-up with the consultant afterwards, I was told I’d be referred to foetal medicine.
Naively, I didn’t even ask why, thinking this was all a lot of fuss over a baby who was small but perfectly healthy. Jesse was born at home under the care of an incredible independent midwife (who was also caring for me during this new pregnancy) – I have always been very wary of the over-medicalisation of maternity care, and left this appointment feeling very sceptical, almost dismissive. It was only when I got home and googled what the implications of a short femur length could be that I started to worry. The only available study had found a significant link with various structural and chromosomal conditions.
That appointment took place on the 20th of December. I was lucky to see my midwife again on the 23rd, and we agreed to do an NIPT test just to be on the safe side. While I was speaking to her, the foetal medicine unit rang with the news that they’d reviewed my scan images and were declining the referral because they weren’t concerned with what they saw. My midwife looked at my growth charts, and we agreed that the most likely scenario was that I was just growing a constitutionally small – but healthy – baby.
All the evidence suggested that everything would be fine. But I spent that Christmas with a tiny niggle in the back of my mind – what if it wasn’t fine? I never worried about losing the baby, but I worried about what my life would look like with a potentially severely poorly or disabled child. I was certain, though, that having got so far through the pregnancy, there was no way I could choose not to have this baby.
The holidays dragged and I was uncharacteristically relieved to start packing the decorations away on Boxing Day. The NIPT results were slow due to all the bank holidays. I had another scan – this time to measure all the baby’s long bones to see if the femur was an anomaly – scheduled for the 6th January. My midwife came with my husband and me to that appointment, and while we went into the scan and she waited in the waiting room, she received our NIPT results. She arranged for us to be taken into a private room where she told us there was a 95% chance that our baby had T21 – Down’s syndrome. I remember saying simply ‘okay’, before waiting what felt like hours in silence for a consultant to come and see us, and listening to the world’s loudest clock ticking away on the wall.
Despite my previous certainty, as soon as I heard my midwife’s words, I knew we couldn’t keep our baby. It feels shameful to admit that we never researched it, we never sought (nor were offered) advice, we never considered our options. We just knew. I felt with absolute certainty that I was not equal to raising a disabled child. My husband and I both work full-time, and our jobs are an important part of our lives and identities. And we had a one-year-old child at home, the centre of our universe, who needed us. We wouldn’t make a carer of him without his consent. We couldn’t irreversibly change his life to save another. And we knew that there was a chance that our baby could be incredibly poorly. We made the decision for her, but also for ourselves. We wanted her desperately, but we didn’t want this life for any of us.
The next two and a half weeks, while we waited for our daughter to be born, were a tale of two halves. I am so grateful that we had that time with her, to remember that she could hear our voices, feel my movement. We danced in the kitchen, my husband Luke and Jesse and I and the baby. We bonded with her in a way that we knew we would never be able to in life. It was agonisingly painful and incredibly precious all at the same time.
Meanwhile, the gruelling practicalities of ending a pregnancy so late on revealed themselves gradually. The amniocentesis and the long wait for the results, even though we already knew what they’d say. The ‘injection’ to stop the baby’s heart – an innocuous word for the most horrifying thing a mother could ever be asked to consent to. An induction and a birth to plan. And afterwards, a visit to the registry office, the baby whose stillbirth we were registering glaringly absent. An appointment with a funeral director, who – very kindly and gently – told me he’d wear a tie as he drove my daughter to the crematorium. As if she’d care.
The way my babies are born is incredibly important to me. Jesse was born at home, and I had planned the same for this baby. Quiet music, darkness, fairy lights, my husband and I and the midwives who had become part of our family, and maybe Jesse. Champagne in the pool afterwards. There was nothing I wanted less than to give birth in a hospital. But I was adamant that I wouldn’t let this birth be any more traumatic than it had to be. It felt as though it was the only thing I could do for my daughter, and I intended to do it with as much love, peace and calm as I possibly could.
Mostly, my labour was long and gruelling. At 28 weeks, my body wasn’t ready to let go yet. My contractions started quickly and decisively but kept going and going with no let-up. After 24 hours, I finally consented to some additional pain relief and later let my waters be broken. We quickly turned the lights back off, emptied the room, and put the music back on. Our daughter was born 15 minutes later, into my hands. Her cord was too short for me to bring her up into my arms, so I placed her gently on the bed and said, ‘You’re perfect, you’re perfect’ over and over again. And she was. We called her Luna.
By the time Luna was born, I was exhausted and numb, and I just wanted to go home. I held her for a few hours and then we left her in the hospital overnight, went home to sleep in our own bed, and arranged to go back to the hospital the next afternoon to spend some more time with her. My sister came with us, and I’m so grateful that someone else was able to meet her. Those few hours were so precious to us, but walking away from the hospital carrying a memory box rather than a baby felt incredibly unnatural.
I couldn’t bear the thought of a funeral, or seeing our tiny girl in a tiny casket, and after much agonising deliberation, we opted for a direct, or unattended, cremation. A few months later, our families joined us on the most beautiful spring day to scatter her ashes in our favourite place – a huge hill called the Cloud, with stunning views over our home and the Cheshire countryside. It was perfect, and such an honour to remember her with the people closest to us.
As I was 28 weeks pregnant when Luna was born, I was lucky to qualify for my full maternity package and took over six months off work to invest in my recovery and to begin to work out how to build a new life without Luna. It has been an incredibly difficult road, but it’s also been an unexpected joy and a privilege to learn how to parent a baby who isn’t with us, to work out how we want to remember her, and to help our friends and family do the same. We use her name all the time and encourage others to as well. Six weeks after her birth, I went to an ARC meeting in Liverpool where I met some other incredible mums who I’ve stayed in touch with, and I’ve made some really special connections through the ARC forum as well. Speaking with them and hearing their stories has really helped me to understand and accept that when it comes to Luna, the love and the pain will always come hand in hand.
While I’ve been deep in the trenches of grief, a small army of people has grown up around me, looking for the moon in the night sky, stopping to appreciate it for a moment, sparing a thought for our most precious girl, and sending us a photo. They speak her name. They hold space for her. With every fibre of my being, I wish that Luna was here with us – but her legacy is beautiful, and I am grateful for it every day.