My husband left for work at 3am that day because he was working remotely with colleagues in Australia. Heavily pregnant, I awoke as my husband left and read for a couple of hours before falling back to sleep. I woke again at 8am to find my waters had broken. “No. It can’t be,” I thought to myself. I was booked in for a caesarean section in two days’ time. I telephoned the labour ward and they told me to come into hospital. The incredible midwives, obstetricians, anaesthetists, foetal cardiologists and neonatologists were prepared for this eventuality.
Joshua had been diagnosed with a severe and complex pulmonary arteriovenous malformation (PAVM) seven weeks earlier at 31 weeks’ gestation. We later found out the PAVM had been caused by hereditary haemorrhagic telangiectasia, a rare and poorly understood genetic condition which affects blood vessels in the body. We had been told there was a chance Joshua could die of heart failure at any moment before, during or after birth.
We were terrified. We were due to attend antenatal classes and prepare the nursery, but these activities were quickly swapped for weekly ultrasound scans, seeking additional opinions from medical experts around the world, and frantically researching foetal medicine journals, which turned up only a handful of studies about Joshua’s condition. Worst of all we were faced with the decision of whether to continue with the pregnancy or not.
The prognosis was uncertain, but there were legal grounds for a late termination. PAVMs can lead to stroke and severe disability. Termination was not the right choice for us, and so we continued with the pregnancy, hoping and praying Joshua would survive and undergo treatment after birth. There were potential treatment options available such as embolisation, which blocks off abnormal blood vessels, or lobectomy, where a lung or part of a lung is removed.
I learned that Pope Francis only has one lung, and so I thought: “If the pope can survive with one lung, so can my son.”
Joshua died three hours after he was born. It was Mother’s Day. I heard him cry once after which he was taken to the neonatal unit for injections and resuscitation. The medics worked on him for an hour, trying to save his life, but the PAVM was too powerful. Fresh from surgery and drugged on anaesthetic and morphine, I was wheeled into the neonatal unit on a hospital bed to where Joshua was lying down. My husband, who had been by Joshua’s side from the moment he was born, looked completely heartbroken. I saw tubes coming out of Joshua’s body, he was wearing a pink hat. He was the most beautiful baby I had ever seen.
I asked the nurse if there was anything else they could do. They had tried everything. He was not stable enough to undergo assessment and treatment. He could have died from the anaesthetic on the operating table. It was not a risk they were willing to take. After spending two hours with Joshua, we held him in our arms until he took his last breath and his heart stopped beating.
There is not a day that goes by that I don’t think about Joshua’s short but precious life. I will always grieve for Joshua and wonder what might have been. I will never hear him cry again, watch him grow up or hear him speak. He is buried next to other babies who died before or shortly after birth. Burying a child at any gestation or age is an experience no parent should have to go through.
Well-meaning people say to me, “you will have more children”, or “time will make it better”. I used to keep silent when people said these things to me, but now I speak up to try to help people understand that Joshua is not replaceable and time does not make it better. What helps is remembering Joshua, crying, talking about him and the impact of his life and death, and connecting with other bereaved parents.
Grief is a complex process and there is no quick fix – you have to be kind to yourself and allow yourself to grieve. There are no time limits and grief does not happen in stages. It is an emotional rollercoaster. Grief is not something you simply “get over”. It coexists alongside the “new normal” and it re-emerges when it is triggered. The process requires tolerating and working through the most unbearable emotions while finding a resilience you never knew existed. Societal narratives about grief desperately need to change, and the dead deserve to be remembered, not “gotten over”.
• The writer is a clinical psychologist. She set up Joshua’s Legacy @joshuaslegacy17 on Twitter and Instagram to help raise awareness about grief and baby loss and provide a place for peer support for bereaved parents
