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OPINION: Stillbirth leaves millions suffering in silence – we must do more to prevent it and end the stigma

Susannah Hopkins Leisher, Chair of the International Stillbirth Alliance, a member of PMNCH

Susannah Hopkins Leisher with her son, Wilder

Susannah Hopkins Leisher

We named our first child Wilder Daniel. He was stillborn 21 years ago, on July 13, 1999.

I’d had a perfect pregnancy, with no complications. Then, just 13 days before my due date, I realised that my baby had stopped moving. Unsuspecting, we drove over to the hospital, where the technician performed an ultrasound to listen for the heartbeat.

“I see the legs. I see the heart,” said the technician. “The heart should be beating, but it is not.”

All we could hear was harsh static, a sound I will never forget.

Over the next two days, I was slowly induced until I went into labour. With most labours, you know you’ll get a living baby at the end, so the pain and bodily stress feel worth it. But my baby was already dead, there would be no joyous greeting of new life, and I wept at how pointless it all felt.

Finally, Wilder was born. He was perfect, with lots of brown hair and weighing about six pounds 12 ounces. Our bereavement nurse, Patty, helped me to hold him. He was still warm from my own body heat. Patty took photographs, which we will always treasure. I was afraid to open Wilder’s eyes, though, so I’ll never know what color they were.

Eventually, Patty took Wilder away. We had consented to an autopsy and had decided to cremate him, so knew we would never see our son again. We never found out why he died.

In the aftermath of losing Wilder, I thought I had "just" lost a baby. But today, the baby I lost would now be a 21-year-old man. Who would that young man be today? What would move him? Who would he love? What would he stand up and fight for? I will never know. This is the devastation of stillbirth. A grief that will stay with me for the rest of my days.

I knew nothing about stillbirth until it happened to me. I expected that my baby would be born healthy. Wilder’s death was a guillotine that split my life in two. It forced me into an enormous club of mothers and fathers from every country and every culture whose babies are stillborn.

According to a newly published report from the UN Inter-agency Group for Child Mortality Estimation, some 5,400 stillbirths occur globally each and every day, the majority (84 per cent) in low- and lower-middle-income countries.

Sadly, these disturbing numbers have remained consistently high for far too long. The number of stillbirths worldwide has only declined by 2.3 per cent annually, from 3 million in 2000 to 2 million in 2019. This is a far slower rate of reduction than the 3.7 per cent reduction seen for deaths of children under five.

This stagnation reflects the overall lack of commitment from policymakers to prioritise and resource efforts to reduce the incidence of stillbirth worldwide.

The real tragedy is that most stillbirths are preventable with known interventions including access to high quality antenatal care and care around the time of birth.

Wilder’s death changed my life. I gradually became active in global advocacy efforts to reduce the terrible toll of stillbirth, and am now honored to chair the International Stillbirth Alliance (ISA), which was founded by bereaved mothers with a vision to break down barriers between clinicians, researchers, and bereaved parents, and take a united stand for global action.

I am just one of millions of bereaved parents, and can only speak for myself, but I believe we all deserve:

We owe it to Wilder, and the many millions of babies who like him were lost to stillbirth, to do everything in our power to bring an end to this avoidable tragedy.

  • Recognition: Stillbirth is not an ‘adverse outcome’. It is the deaths of our babies, who were loved. Recognise us as parents, each with our unique experience of stillbirth, and accept that our loss is as significant as that felt by any parent who has lost a child.
  • Answers: We’re tired of hearing that ‘sometimes these things happen’. No one says that when adults die, so why is it acceptable when a baby dies before birth? There is always a reason. Fund research on causes and include stillbirths in perinatal research.
  • Support: We’re harmed when society refuses to acknowledge our loss, when clinicians lack training in respectful care, when we are given no choice about whether to hold our babies after birth. Too many parents are left grieving in silence. We need action to eradicate the stigma and taboo around stillbirth, and to support clinicians to provide appropriate care after stillbirth.
  • Partnership: Parents are the experts on what it’s like to lose a child to stillbirth and need to be fully consulted on and involved in proposed changes to policy and practice. Treat us as allies, not afterthoughts.
  • Action! There can be no more dire health outcome than death. Stillbirth means the deaths of millions of babies every year, most of these preventable. This is a public health tragedy that does not need to happen. Policy makers must take action quickly, as if lives depended on it – because they do.