Estimated read time: 6-7 minutes
Every year in the United States, more than 20,000 babies die before taking their first breath. If the sheer number of stillbirths is shocking to most people, it is a harsh reality for the thousands of families touched by these tragic losses.
Now, those who have lost babies are speaking up for more support, research, and funding to address this critical issue.
"Stillbirth has been receiving a lot of attention over the last year or two in the United States compared to the past, and it has been driven by bereaved parents who have suffered a stillbirth," said Robert M. Silver, MD, chair of the Department of Obstetrics & Gynecology at University of Utah Health. "They have been lobbying Congress and have affected legislation."
Leading stillbirth research
Silver has devoted his medical career to the pursuit of stillbirth prevention and better care for those who have suffered through pregnancy loss. He has been a leader in stillbirth research, and his advocacy for patients and their families has helped fund and open U of U Health's Stillbirth Center of Excellence and Pregnancy After Loss Program.
"Part of our clinic is peer-to-peer support, and we are lucky to have many parents who are part of this," Silver said. "I think this is something that is becoming more and more common in medicine, to have affected people participate in helping doctors and scientists figure out what the most important outcomes for clinical care and research are for families."
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 parent voices at the program. "This will support parents beyond hospital walls, through a pregnancy after loss, and into the complicated dynamic of parenting living children following a loss."
Compassion and support through loss
Fletcher knows the shock, complicated grief, and heartache of losing a child before birth. Her son Benjamin was stillborn 17 years ago, just two weeks before Christmas, while three boys waited at home to welcome a new brother into the family.
"The journey has not been easy, and at times grief still knocks me off my feet," Fletcher said. But she added, "Here I am, 17 years later, working with incredible people to support other families through their loss and advocating for change to end preventable stillbirth."
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 rollercoaster of loss" since she discovered her son Jordan's heart had stopped beating before he was born on Jan. 1, 2014.
Adams and her husband have gone through 10 more pregnancies and lost three boys and a 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 this clinic has opened," Adams said. "I've needed the more frequent visits and the extra monitoring. It has helped to keep my mind in a better place during this pregnancy since I have been able to hear my baby's heartbeat more often and see her on ultrasounds more frequently."
"Dr. Silver has been so accommodating and supportive of my needs," she added. "It has also been helpful to have Stacey [Fletcher] as a parent support. She has been there to encourage and listen to me."
Even though almost a decade separates Fletcher and Adams from their initial devastating experience with stillbirth, the physical, social, emotional, and mental challenges linger long after the loss and never completely disappear.
In describing her complicated journey through loss, Fletcher said, "Although the most intensive trauma and shock takes place at the hospital in the ultrasound and delivery rooms, it is the months and years that follow which are underestimated as shock often transforms to post-traumatic stress disorder (PTSD), anxiety, and depression."
"Rather than reaching out for help, many parents isolate instead," she continued. "Healing becomes a lonely and complicated road where parents try to move forward while remembering and honoring the baby who they lost."
"Moms who have gone through loss need more support, and it's great that we now have a place that can meet these needs," Adams said. "I'm also incredibly grateful for the things that they will be able to do with the research side. I hope more answers can be found for women who are in my situation."
Finding answers to save lives
"We need answers, so that we can decrease the rate of infant loss," Adams added. "I'm hopeful this clinic and their research will start to impact those numbers."
More research, better data collection, and use of existing prevention strategies will all be needed to lower the rate of stillbirths in the U.S. Some recent studies have concluded that up to 25% of all stillbirths in our country are preventable. Silver strongly believes efforts to lower the stillbirth rate must be grounded in establishing a cause of death.
"In order to improve stillbirth rates, we really need to know what causes them, and autopsies are critically important for trying to figure out what causes these deaths," Silver said. "In many, many cases, we never determine what causes a stillbirth, but if we do autopsies and other tests to evaluate the cause of death, we can determine a cause of death in over 80% of the cases."
Misconceptions about autopsies and a national shortage of pathologists stand between patients and their doctors getting the critical answers they need to try and prevent another stillbirth during a future pregnancy. Right now, only 20% of patients in the U.S. have autopsies on a stillborn baby.
"It is so emotionally traumatic to have a stillbirth, and then there is a tremendous amount of anxiety and stress with a subsequent pregnancy," Silver said. "Most of these parents choose to get pregnant again so then knowing what happened and using specific strategies to decrease the probability of it happening again are invaluable."
Even though his life's work involves sharing in the grief and heartbreak of parents who have lost a child, Silver is optimistic about the future and the babies' lives that can be saved. Critical legislation has been passed, and another funding measure is awaiting Congressional approval.
The Stillbirth Health Improvement and Education (SHINE) for Autumn Act is federal legislation that focuses on funding for enhanced data collection, research, and education to prevent stillbirths. Passage will depend on constituents in each state voicing their support for the law to their U.S. senators and representatives.
"We are having a moment in the United States," Silver said. "We have an opportunity to be better over the next few years, and I am optimistic about it in a way that I have not been in the past." Watching his patients and hearing their voices inspires him to keep looking for answers and ways to ensure they are not alone.
Silver reflected on what he is already seeing in the Pregnancy After Loss Program. "It has been rewarding to have my patients get to know each other, support each other, and become lifelong friends. It is incredibly valuable."
