Each year in the United States, more than 20,000 babies die before taking their first breath. While the number of stillbirths is shocking to most people, it is a harsh reality for the thousands of families affected by these tragic losses.
Now, those who have lost a baby are speaking out, calling for more support, research and funding to tackle this critical issue.
“Stillbirth has received more attention in the United States in the past year or two than it has in the past, and that attention is focused on the parents who have been bereaved by stillbirth,” said Robert M. Silver, M.D., president of the association. the doctor said. Department of Obstetrics and Gynecology, University of Utah Health. “They are lobbying Congress and influencing legislation.”
Leading stillbirth research
Silver has dedicated her medical career to preventing stillbirth and pursuing better care for those who have suffered a miscarriage. He is a leader in stillbirth research, and his advocacy for patients and their families helped fund and open U of U Health’s Stillbirth Center of Excellence and Post-Pregnancy Loss Program.
“Part of our clinic is peer-to-peer support and we are fortunate to have a lot of parents participating in this,” Silver said. “I think this is something that is becoming more and more common in the medical field. It’s about people getting involved.”
The peer support aspect of the program is designed to break new ground with patients and their families. “There is power in peer support,” said Stacey Fletcher, program manager for the program Parent Voice. “This will support parents beyond the walls of the hospital, through pregnancy after bereavement, and into the complex dynamics of raising a living child after bereavement.”
Photo: LightField Studios/Shutterstock.com
Compassion and support through loss
Fletcher knows the shock, complicated grief and heartache of losing a child before they are born. Her son Benjamin was stillborn 17 years ago, just two weeks before Christmas, while three boys waited at home to welcome a new sibling into the family.
Fletcher said, “The journey was not easy, and I still feel paralyzed with sadness at times.” But she added: “Now, 17 years later, I’m here working with amazing people to support other bereaved families and advocate for change to end preventable stillbirths.” Ta.
One patient can already attest to the supportive lifeline the research center has provided her over the past few months. Kirsten Adams has been on what she calls a “roller coaster of loss” since discovering her son Jordan’s heart had stopped beating before he was born on January 1, 2014.
Ms. Adams and her husband went through 10 more pregnancies, losing three boys and one girl in the late second trimester. Her current pregnancy is being closely monitored by Silver and supported by Fletcher and others.
“I’m so grateful to have this clinic open,” Adams said. “I needed more frequent visits and additional monitoring. I was able to listen to my baby’s heartbeat more often and see my baby more often on ultrasounds, so I needed more frequent visits and additional monitoring during my pregnancy. I was able to keep it in better condition.”
“Dr. Silver was very accommodating to my needs,” she added. “It also helped to have Stacey (Fletcher) as a supportive parent. She encouraged me and listened to me.”
Fletcher and Adams are nearly a decade removed from their first harrowing experience with stillbirth, but the physical, social, emotional and mental challenges linger long after a stillbirth and never completely go away.
Describing her complicated journey through loss, Fletcher says, “The most intense trauma and shock occurs in the ultrasound room or delivery room of the hospital, but because shock often transforms into post-traumatic symptoms, “It is the months and years that follow that are underestimated.” These are stress disorders (PTSD), anxiety, and depression. ”
“Many parents isolate themselves rather than seek help,” she continued. “Healing can be a lonely and complicated journey, as parents try to remember and honor the baby they lost as they move forward.”
“Mothers who have experienced loss need more support, and it’s great that we have a place where we can meet those needs,” Adams said. “I’m also very grateful for their help on the research side. I hope we can find more answers for women in similar situations to me.”
find answers to save lives
“We need answers so we can reduce the rate of infant loss,” Adams added. “We are hopeful that this clinic and its research will begin to impact these numbers.”
More research, better data collection, and leveraging existing prevention strategies are all needed to reduce stillbirth rates in the United States. Several recent studies have concluded that up to 25% of all stillbirths in our country are preventable. Silver strongly believes that efforts to reduce stillbirth rates must be based on determining the cause of death.
“To improve the stillbirth rate, we really need to know what causes stillbirth, and autopsies are critical to understanding the causes of stillbirth,” Silver said. “In many cases, it is not possible to determine the cause of a stillbirth, but an autopsy and other tests to assess the cause of death can determine the cause of death in more than 80 percent of cases.”
Misconceptions about autopsies and a nationwide shortage of pathologists stand between patients and doctors getting the critical answers they need to prevent another stillbirth in future pregnancies. Currently, only 20% of stillborn infants are autopsied in the United States.
“Stillbirth is extremely traumatic and subsequent pregnancies can be stressful and stressful,” Silver said. “Most of these parents choose to become pregnant again, so knowing what happened and using certain strategies to reduce the chance of recurrence is invaluable.”
Even though his life’s work is to share the grief and heartbreak of parents who have lost a child, Silver is optimistic about the future and the lives of the babies that will be saved. Important legislation has been passed and another funding measure awaits Congressional approval.
The Fall Stillbirth Health Improvement and Education (SHINE) Act is a federal law focused on funding enhanced data collection, research, and education to prevent stillbirths. Passage depends on constituents in each state expressing support for the law to their U.S. senators and representatives.
“We are living through a moment in America,” Silver said. “We have a chance to get even better over the next few years, and I’ve never been more optimistic.” By observing his patients and listening to their voices, he seeks answers and hopes that patients will I started looking for ways to make sure I wasn’t alone.
Silver reflects what we already see during pregnancy after a loss program. “It’s rewarding to let my patients get to know each other, support each other, and become lifelong friends. It’s invaluable.”
