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Cooperative's Role in Statewide Stillbirth Awareness and Prevention Campaign Featured in NJ Spotlight News

It’s time to talk about stillbirth, NJ campaign urges

Awareness campaign involves informing the public and training maternal health providers

Marise, a New Jersey mother, shared her story of loss after experiencing stillbirth for the New Jersey stillbirth awareness campaign.

In brief but powerful videos, mothers talk of the shock they faced when they learned their baby was stillborn, the confusion about what to do next, followed by anger, depression and feelings of worthlessness.

“You feel like your body betrayed you,” Kim recalls.

“It’s all your hopes and dreams being ripped from you,” Marise says, breaking into sobs. “But no matter the outcome, you are not alone.”

The videos — featuring New Jersey women with first-hand experience — are a key public outreach tool in New Jersey’s stillbirth awareness campaign, launched last year to help educate families, maternal health professionals and others about the issue. The state has taken significant steps to improve other maternal and child health outcomes and organizers hope this effort will reduce the stigma around stillbirth, connect families who have experienced such a loss with support and save young lives, when possible.

In the United States, stillbirth is defined as the loss of a baby during delivery or pregnancy if the loss is after 20 weeks, according to the federal Centers for Disease Control and Prevention. Before 20 weeks of pregnancy, this loss is called a miscarriage.

Nationwide, there are about 21,000 stillbirths each year — roughly 1 in 175 pregnancies — although significant racial disparities exist.

How NJ compares

New Jersey’s stillbirth rate is fairly high, at 6.2 deaths per 1,000 live births, versus 5.9 nationwide. Some 636 babies died later in pregnancy or during birth in 2021, according to the most recent state data. That’s the eighth-highest stillbirth rate nationwide, experts note, adding that the reasons are still unclear.

‘It’s sad. It’s scary, but we do need to talk about it.’ — Robyn D’Oria, Central Jersey Family Health Consortium

“That probably comes as a big surprise to many people,” said Ann Mruk, a nurse who oversees the state-funded stillbirth campaign at the Central Jersey Family Health Consortium, which is leading the outreach work along with colleagues in the north and south and The 2 Degrees Foundation, a philanthropic organization launched by two New Jersey moms who experienced stillbirth. “But every pregnancy is at risk for stillbirth. I don’t think people are aware of this,” Mruk said.

That risk is not spread equally, however. CDC nationwide figures show that Black babies are roughly twice as likely to be stillborn as those who are white, Asian or Hispanic. American Indian and other native groups also have elevated rates of these losses. The patterns differ slightly in New Jersey, where stillbirth rates are 3.7 for Asian babies, 5.1 for white infants, 6.9 for Hispanic babies and 10.7 for Black babies, according to state reports.

Stillbirth can be triggered by a variety of factors. A cause cannot be determined one-third of the time, Mruk said, but at least 1 in 4 stillbirths can be prevented. A physical trauma — an auto accident, or violent attack — can lead to stillbirth, as can problems with the placenta or umbilical cord, or pregnancy-related increases in blood pressure. A mother’s chronic health condition, like diabetes, can also raise the risk of stillbirth, experts note.

New Jersey’s stillbirth awareness campaign urges women to know their bodies and how their baby normally moves and behaves, and to speak up if they notice changes. The work also involves training maternal health providers in how to better listen to women when they voice these concerns and support families if they do experience a loss.

Empowering women

“We really tried to empower women. They know their own body,” Mruk said. “And they should reach out to their provider if something doesn’t feel right,” she added, “and don’t wait for Monday, or 9 a.m.,” urging them to act quickly.

Mruk and her colleagues stressed that pregnant women need to take care of themselves, address chronic conditions and get care if they feel sick. But a stillbirth isn’t the mothers’ fault, they stressed.

“It’s important not to blame mothers,” said Robyn D’Oria, a nurse and CEO of the Central Jersey Family Health Consortium. “Nobody wants to talk about this. It’s sad. It’s scary,” she added, “but we do need to talk about it.”

The campaign kick-off last year included the first-person accounts from New Jersey women who experienced a stillbirth and remarks from policy experts and health care providers. The team — which also includes the Southern New Jersey Perinatal Cooperative and the Partnership for Maternal and Child Health of Northern New Jersey — developed a website, which houses the video stories, which have been viewed thousands of times, and offers links to more information in five languages, including Portuguese and Tagalog.

‘The first time someone hears about stillbirth should not be when it happens to them.’ — Debbie Haine Vijayvergiya, The 2 Degrees Foundation

The three maternal health organizations involved in the campaign are also leading Family Connects NJ, a new state initiative to keep new mothers and babies healthy by dispatching a nurse to conduct a home visit within two weeks of the birth. Similar programs in other states have shown proven results, as detailed in NJ Spotlight News’ Change Project in February.

How to avoid

To help people better understand how to avoid a stillbirth, the regional awareness campaign leaders are also hosting in-person events. A gathering in Newark in January drew more than 90 people and a town hall in Vineland in February attracted more than 40 community health workers, social workers, delivery nurses, doulas, child welfare experts, families and more, according to Karl Parker, communications manager for the Perinatal Cooperative. An event in Central Jersey is now being planned.

“The first time someone hears about stillbirth should not be when it happens to them,” said Debbie Haine Vijayvergiya, one of the founders of The 2 Degrees Foundation, at the campaign kick-off. Haine Vijayvergiya’s daughter Autumn Joy was stillborn in July 2011, an experience the Maplewood woman said propelled her into activism. She also helped create the content for the state awareness campaign’s website.

Training for maternal health workers

The campaign — funded with $100,000 through the state Department of Health — has more than a public informational focus. The regional leaders also train maternal health workers on how to support families when they experience a stillbirth and how best to negotiate painful questions, like whether to photograph the deceased infant and how to mark their death. Some hospital systems, including Virtua Health in South Jersey, have also launched programs to support grieving families.

Dalya Ewais, the Health Department communications director, said the department is committed to improving maternal and infant health and reducing infant mortality, particularly for Black babies. Last year it launched a new maternal data center, which includes report cards on hospitals where women give birth.

“It is part of the Department’s prevention agenda, especially focusing on reducing health disparities due to social, economic, environmental, and behavioral inequities,” Ewais said. It also aligns with the goals of the Nurture NJ initiative launched by First Lady Tammy Murphy to make the state a safer place to give birth and raise children, she said.

The work builds upon requirements outlined in a 2013 law championed by former state Sens. Loretta Weinberg (D-Bergen) and Dawn Marie Addiego (D-Burlington), known as the Autumn Joy Stillbirth Research and Dignity Act. It called for state officials to require hospitals and other birthing centers to adopt policies to provide support and follow-up care for families that lose a baby this way and to beef up data collection around stillbirth. Haine Vijayvergiya was among those who advocated for the law.

Click here to read the story as it appeared in NJ Spotlight News.



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