“Nothing could have been done.” That is often the response to the parents of the 24,000 stillborn babies in the United States every year.
But that is not the perspective of Star Legacy Foundation, a 16-year-old 501(c)(3) non-profit organization dedicated to reducing pregnancy loss and neonatal death and improving care for families who experience such tragedies.
When Star Legacy members, including Marny Smith of Larchmont, N.Y., learned that maternal and neonatal protocols employed by the National Health Service in Scotland have reduced the stillbirth rate there by an astounding 23 percent, it raised the question: “Why can’t this be duplicated in the U.S.?” Smith had delivered a stillborn son, Heath, and wanted more attention to this heartbreaking issue. Smith initiated a series of conversations that led to an introduction to researchers at Ariadne Labs, an innovation lab with the necessary experience to determine the extent to which the National Health Service protocols would be applicable in the United States.
Star Legacy subsequently joined forces with Ariadne Labs to adapt the NHS England’s “Saving Babies’ Lives Care Bundle” into a care bundle appropriate for a U.S. context. Smith launched the fundraiser to support this work.
A team at Ariadne Labs will study and modify the NHS England bundle over a nine-month period. This work will rely on Ariadne’s proven innovation methodology and be informed by an intensive literature review, along with qualitative interviews and focus groups with previous implementers of the bundle, potential end-users in the U.S., patients who have experienced stillbirth, and other stakeholders. The team will work to reconcile contextual differences to effectively adapt the guide. For example, the U.S. does not have a national health care system like that in the United Kingdom, and factors such as rates of smoking, diabetes, hypertension, and multiple pregnancies also differ, creating a need for different approaches.
“Stillbirths remain a little-understood outcome, but the impact on families is immense,” said Francine Maloney, MPH, Assistant Director for the Implementation Platform at Ariadne Labs.
Stillbirth affects about 1 in 160 births, and Black mothers are more than twice as likely to experience stillbirth compared to Hispanic and white mothers in the U.S. Despite improvements in maternity care since 1940, the rate of stillbirth has remained relatively stable since the late 1990s. “Yet, there is evidence that we can reduce the number of stillbirths,” Maloney said.
At the heart of this work is the belief that many stillbirths can be prevented. Lindsey Wimmer, RN, MSN, CPNP, CPLC, Founder and Executive Director of Star Legacy, suffered a stillbirth during her first pregnancy and realized how little she knew about this problem. Wimmer remembers she thought “stillbirth” was an antiquated term. When talking to her colleagues, she realized that most health professionals receive little to no information about providing care after a stillbirth, and even less about how to prevent it.
Shauna Libsack, Vice President of Operations for Star Legacy, noted that many families are told they “have a better chance of being struck by lightning twice in the same day than to ever have this happen again. Unfortunately, we know that is not true.”
Star Legacy seeks to counteract the notion that “stillbirth is unavoidable, that it just sometimes happens” and to catalyze a shift to a more proactive approach. “We came to the realization that clinical innovation is not necessarily what’s missing; the problem is also political, financial, and legal,” said Libsack.
“It is inspiring to see how many families are willing to work for change so future families don’t have a similar experience,” said Wimmer, citing the efforts of many Star Legacy Foundation volunteers. Star Legacy is particularly grateful for the tremendous efforts of Smith who worked tirelessly to raise the funds needed to start the initiative with Ariadne Labs.
Ariadne Labs will help lay the groundwork for evidence-based practices that can build support for improving maternal practice. “While this project will not prevent every stillbirth from happening, we believe it will reduce the number of preventable stillbirths,” Maloney said.