We knew we had to be brave. So we were, and we went home without our little girl, utterly broken
In April 2023, I will be taking on the challenge of running the London Landmarks Half Marathon. The reason I am fundraising and taking part in the LLHM, is in memory of our first-born daughter, Lola.
At Lola's 12-week scan, we were told that she might be unwell. We were worried, petrified for her, and for us. We had lost 2 of our babies before Lola, to miscarriages, which had already left us feeling bruised and broken. We knew, sometimes, things can go horribly wrong.
Further tests ruled out any problems. The odds were not in her favour, but Lola had, apparently, beaten them. We could barely believe it. We were so happy. We felt like the luckiest parents alive.
After that, Lola started kicking and moving around. We went to yoga overlooking the Thames, ate ice cream on the Southbank and hung out together. I began to feel her move around inside me. I was completely in love with her, and I couldn't wait to meet her.
Lola’s diagnosis
A few months later, we were told the tests were wrong. There had been a terrible mistake. Lola had a serious heart condition, maybe a few other things to cope with. We became worried for her once again.
Over the following days and weeks, we spent more time with Lola and yet more doctors. We watched her moving around in scans, desperately hoped she would be okay, and learned she would need heart surgery very soon after being born. The doctors at St Thomas' and the Evelina said things were serious, but surgery was possible, and we had faith.
By now, we knew our much-loved daughter would be different. We knew she would have perhaps many, and some very serious, challenges – and we could not have loved her more.
We talked about her having a 'different' kind of life. A life which was different to the one we had anticipated and planned for her. We agreed we would give her every single bit of support and love she needed to be herself and live her very best life, however that looked for her.
We knew this would be hard and we knew there were no guarantees. We hugged on the Southbank before we strolled back from the hospital to home and work. We were hopeful. We waited for yet more tests to understand precisely what Lola needed.
The quiet room that became loud
We were due to go away on holiday when the hospital called. They said it was best we went in, not to discuss it over the phone. We knew this must be bad. Life started to slow down. Simple movement and motion took on a heavy, laboured, feel. We shuffled around the house, getting things together and we made our way slowly to the hospital. We dreaded what might come next.
In the small room at the back of the obstetric ward, the "quiet room", where they take you when there is bad news, we sat down with a doctor and a midwife. They had that look in their eyes and started their conversation with "I'm so sorry".
I stared out the window at the river as they spoke. The quiet room was suddenly loud, full of horrible words and sobbing. I couldn't really grasp what was going on.
Everything after that was a bit of a blur. Confusion, fear, disbelief. How did things get here? Hope. Questions. Parenting. Failing. Finding out. Asking more questions. How do we help her? Is there anything we can do to make sure our daughter is not in pain? How can we keep her safe? What can we do? Wanting to do our best. Trying to understand. Trying to find a way to make it better. Slowly coming to grips with the fact that we could not.
In the weeks that followed, in the countless conversations, endless hospital visits, and the sorts of conversations and decisions about Lola's wellbeing that no parent should ever have to face, we learned that Lola had a terminal illness and there was nothing we could do to save her. Our little girl was slowly, and painfully, going to die.
Saying goodbye
After a fairly brief labour, on Father's Day in June 2011, our tiny daughter arrived. We wrapped her little body in a blanket made by my mother and held her close. This time with our daughter was both precious and tragic. We could only spend so much time with Lola before her little body had to be returned to a cold room, until she could come back and spend time with us again. Saying goodbye each time was like having part of us removed.
The midwife from the early tests that were wrong and from the awful conversation in the quiet room that became loud, came to visit Lola and us. She was brave and she was kind. She told us she thought Lola was beautiful. We said, so did we. We all cried.
We wondered how we'd be able to go home without our little girl. We were terrified when we had arrived to give birth to Lola, and yet, leaving the hospital felt utterly impossible after she was born.
We spent days there. We knew they would be some of our last moments with her, and somehow, we knew we had to find the strength to go. Someone else might need our special room, for delivering their baby who had died. Someone else might need the support of this incredible group of professionals who were caring for us, and for Lola. We knew we had to be brave. So we were, and we went home, utterly broken.
Processing our and Lola’s loss
After that, it was like everything around us went grey. All the good in the world disappeared.
A lovely young community midwife visited us at home and congratulated us on the arrival of our baby. My husband explained quietly that we didn’t bring our baby home. We went to my bedroom so that she could bind my breasts to stop my milk coming in. She offered me a pill that might also help and said she was so sorry once again. My heart broke for her to have to go through this with us, but I was too exhausted to say so. We were destroyed, with no idea how to navigate the loss of our daughter.
We returned to the morgue, to spend more time with Lola. My kind and brave friend, Heather, came to the funeral home with me to visit her. We dressed our little girl in merino wool leggings from New Zealand and a hand knitted top that another dear friend, Rachel, had dressed her own daughter in when she was born. So many lovingly sent "hand-me-ons" for our daughter. Another kind friend, Lucy, came to our house in London, to help me go out the front door. Wonderful people from far away, Claire and Sally, arranged food to be sent, to keep us going.
So many kind people turned up, checked in, reached out and took care of us. We were so lucky we were not left to carry our terrible grief on our own.
We couldn't have. Thankfully, people we knew – and people we had never met before – were there and just so kind. They still are to this day. Over the past 11 years, we have continued to absorb Lola's diagnosis and her loss with the support of the many good hearts that surround us.
We have also watched as the support for parents who lose their children has greatly improved since Lola was born.
We have tried to be part of that improvement, having set up a website to offer post-natal yoga for mums who have been pregnant and who have suffered the loss of a child with The LOLA Project, or www.lossofalovedarrival.com.
Our contribution is tiny, compared to charities like Tommy’s, who work tirelessly, carrying out vital research to make sure parents don't go through the devastating loss of a child, and to support any parents who do. But it all helps – it all helps parents like us, parents in the worst possible situation.
The folks at Tommy’s really are amazing, and I am so grateful to be doing the London Landmarks Half Marathon in support of the vital work they do. So, wish me, and Lola, (and yet another dear friend, Harriet, who is running with us) luck! It will be so good to do this in memory of our beautiful, much-missed daughter.
It’s kind of all we can do, this stuff, just to keep her name alive and honour how profoundly and utterly she is loved, and missed in our day to day lives. I can’t wait to celebrate with Lola, her Dad and her sister, at Lola’s memorial bench on the Southbank afterwards, where her inscription reads:
Lola Holden. Born 19 June 2011. For our lovely little girl. From so many who love you and miss you, ever. E te mōkai, aroha nui ki a koe. Haere atu rā, e hine, ki tō moenga roa. Kāre rawa koe e warewaretia (“Little one, much love to you. Go now to your eternal rest. You will never be forgotten.")