Shannon Renfro was worried when she went into the hospital to give birth to her second child.
For several days, she had noticed what she could only describe as “strange” movement coming from the baby. Call it mother’s intuition, but something seemed off. Repeatedly she called her doctor, who convinced her she was just imagining things. She tried to relax.
But when Renfro went to the hospital at 40 weeks and 3 days, her baby no longer had a heartbeat. Baby Savannah Grace was born still, the cause of her death unknown. Much later, Renfro learned that a change in movement can often be the only indication that something is wrong.
Renfro left the hospital holding not her baby, but a box with a few mementos — a tiny hospital bracelet, a blanket — and a folder of outdated resources. The box also included an envelope intended for a lock of hair and a card for the first foot and handprints. Both were empty. No one had bothered to remove them.
Trying to push away her grief, Renfro spent the next two years pursuing a congressional inquiry against a Hampton, Va., military hospital for negligence. Tired of the stress and the rhetoric she kept getting, she dropped the case. It never was about money, anyway — it was about changing the system so other women wouldn’t have to go through the same thing.
Renfro decided to pursue change her own way.
In 2011, Renfro got involved with the Minnesota-based Star Legacy Foundation, a national organization dedicated to preventing stillbirths and other neonatal deaths and to caring for families who’ve been through it. In 2014, she became a certified grief counselor. This summer, she was named the chair of Star Legacy’s Virginia chapter.
“I can’t do anything about my daughter, but I can help others,” says 37-year-old Renfro, who now lives in Gloucester with her husband, Eric, and three children — two of whom were born after the 2009 stillbirth. “It’s such an important issue, but it’s a silent issue. It needs to be talked about.”
Most importantly, Renfo says, people need to know stillbirths often can be prevented. And with October being Pregnancy and Infant Loss Awareness Month, it’s a good time to have the conversation.
Every day, 71 babies are born still in the United States.
That’s about 26,000 each year. One in 160 pregnancies. At least half of those stillbirths occur in the 3rd trimester (when viability outside the womb increases) to mothers who have had mostly unremarkable pregnancies. They often seem to be healthy babies in the womb — until they’re not.
“Thousands more are miscarried or die shortly after delivery,” says Lindsey Wimmer, executive director of the Minnesota-based Star Legacy Foundation, which was started in 2006. “Everyone knows someone who has been touched by pregnancy loss and infant death — but we don’t talk about it. [The Foundation’s] efforts are centered around making sure that every family knows how to reduce their risk of stillbirth and other poor pregnancy outcomes, educating health professionals on the latest research in stillbirth prevention and supporting families who are facing this tremendous loss.”
Virginia is only slightly behind the national average of stillbirths. At Norfolk General Hospital, for example, there are 10-25 stillbirths a month, according to Deborah Dougherty, a perinatal bereavement nurse at the hospital.
Through education — especially by letting women know how they can reduce their risk — the Foundation believes the stillbirth rate could be reduced by as much as 40 percent.
Star Legacy centers their efforts around five pillars: research, advocacy, awareness, education and family support. According to the Foundation, stillbirth is the most understudied issue in medicine today. It wasn’t until 2015 that legislation was passed in Virginia that established a hospital protocol when a stillbirth occurs, spelling out what should be in a standard evaluation, or autopsy.
“Studies show when you have a cause, it helps,” says Renfro, who worked with Virginia Sen. Tommy Norment on the legislation. “If you have an answer and a reason, it can help with future pregnancies.”
The legislation also directed hospitals to develop policies and guidelines to assist families coping with the heartbreak. Renfro frequently meets with hospital staff to hand out Star Legacy’s informational pamphlets and to let them know about available training. The pamphlets are hugely beneficial, Dougherty says, because they give information that often isn’t available anywhere else.
“In the parenting books, there’s no section on what to do if your baby dies,”
Dougherty says. “It still happens, whether you want to think about it or not. But it does happen.”
“Information is powerful,” adds Renfro, who points out that education can simply be encouraging conversations between women and their doctors about stillbirth prevention.
A few things women don’t always know: If they have a stillbirth, they are entitled to a birth certificate. And a woman who has a stillbirth from a cord accident is 10 times more likely to have another. That’s why it’s so important for women to listen to their bodies.
“We have had some saves,” Renfro says. “Women have contacted me and said something didn’t feel right. [After encouraging them], they went in and had a C-section.”
Supporting women and families is a large part of Star Legacy’s mission and is near and dear to Renfro’s heart. “There is support in the area,” she says. “Know it’s okay to talk about it.” Bon Secours Hampton Roads Bereavement Center offers support groups for people facing different kinds of grief, including from perinatal loss. Star Legacy also offers a number of online support groups.
Renfro knows there’s still a ways to go. Though her husband is now retired from the Navy, she still wants to see a federal law to establish protocols for military hospitals. She also would like to see adjustments to the “39-week rule” that severely limits labor induction before 39 weeks of pregnancy. The 2009 rule was intended to prevent premature births, but its strict application has “probably led to hundreds” of early-term stillbirths, according to a study in the journal BMC Pregnancy & Childbirth.
“There are a lot of stillbirths that are unavoidable,” Renfro says. “But a lot of them are. We can do better.”