OPINION: The stillborn leaves millions of sufferings in silence – we need to do more to prevent this and stop the stigma

November 4, 2020

Susannah Hopkins Leisher, president of the International Union of Stillbirths, a member of the PMNCH

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

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

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

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

For the next two days, I slowly induced myself until I started trying. With most of your efforts, you know that you will eventually get a live baby, so the pain and physical stress feel valuable. But my baby was already dead, there would be no joyful greeting of new life and I cried how pointless it all was.

Wilder was finally born. He was perfect, with a lot of brown hair and weighing about six pounds. Our suffering sister, Patty, helped me keep him. He was still warming from the heat of my own body. Patty took photos, which we will always keep. I was afraid to open Wilder’s eyes though, so I’ll never know what the colors are.

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

After losing Wilder, I thought I had “just” lost a baby. But today the child I lost would now be 21 years old. Who would that young man be today? What would trigger it? Who would you like? What would he stand up for and fight for? I will never know. This is the destruction of the stillborn. The sadness that will stay with me for the rest of my days.

I knew nothing about the stillborn until that happened to me. I expected my baby to be born healthy. Wilder’s death was a guillotine that divided my life into two parts. She forced me into a huge club of mothers and fathers from every country and every culture whose babies were stillborn.

According to a newly released report by the UN Inter-Agency Group on Child Mortality Assessment, about 5,400 stillbirths occur globally every day, the majority (84 percent) in low- and low-income countries.

Unfortunately, these disturbing numbers remain consistently high for too long. The number of stillbirths in the world fell by just 2.3 percent a year, from 3 million in 2000 to 2 million in 2019. This is a far slower rate of reduction than the 3.7 percent reduction for deaths of children under five.

This stagnation reflects the overall lack of commitment of policy makers to prioritizing and efforts to reduce the incidence of stillbirths worldwide.

It is a real tragedy that most stillbirths can be prevented by known interventions, including access to high-quality antenatal care and time-of-birth care.

Wilder’s death changed my life. I have gradually become active in global advocacy efforts to reduce the terrible compensation of stillbirths, and I am now honored to chair the International Stillbirth Association (ISA), which founded grieving mothers with a vision to break down barriers between clinicians, researchers and grieving parents. global action.

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

We owe Wilder and the millions of babies he likes are lost stillborn children, to do everything in our power to stop this avoidable tragedy.

• Recognition: Stillbirth is not an ‘unfavorable outcome’. It is the death of our babies who were loved. Recognize us as parents, each with our own unique stillbirth experience, and accept that our loss is just as important as any parent who has lost a child.
• Answers: We got tired of hearing that ‘sometimes things like that happen’. No one says that when adults die, then why is it acceptable when a child dies before birth? There is always a reason. Fund cause research and include stillbirths in perinatal research.
• Support: We are harmed when society refuses to acknowledge our loss, when clinicians have no care training, when we are not given a choice about whether to keep our children after birth. Too many parents remain mourning in silence. We need action to eradicate the stigma and taboo around stillbirth and support clinicians in providing appropriate postpartum care.
• Partnership: Parents are experts on what it is like to lose a child because of stillborn children and should be fully consulted and involved in proposed policy and practice changes. Treat us as allies, not as afterthought.
• Action! There can be no worse health outcome than death. A stillbirth means the death of millions of millions of babies each year, most of which can be prevented. This is a public health tragedy that should not happen. Policymakers need to take action quickly, as if lives depend on it – because they do.