After their son, Joseph, was unexpectedly delivered stillborn at Connecticut’s Yale New Haven Hospital in 2012, couple Timothy and Jessica Keane wanted to help other families experiencing perinatal loss—as well as the doctors and nurses involved.
The Keanes, working with Yale New Haven Health System (YNHHS), created the Joseph Keane Fund, a nonprofit that has provided emotional and financial support as well as services to 200+ families and medical staff at Bridgeport Hospital, Greenwich Hospital, and other YNHHS facilities.
More than 200 medical professionals have attended Joseph Keane lectures on stillborn and perinatal bereavement—topics that some critics say can be overlooked in clinical training, despite stillbirths, or the loss of a baby after 20 weeks of pregnancy, occurring in about one in every 175 deliveries in the US each year.
“It’s grown into something much bigger than we ever anticipated,” Timothy Keane told Healthcare Brew, adding that he hopes to bring the program to other hospitals across the US.
Although stillbirths are one of the most common adverse pregnancy outcomes, no uniform standards exist to evaluate and classify them, according to the American College of Obstetricians and Gynecologists and the Society for Maternal-Fetal Medicine. That, combined with declining autopsy rates, makes it hard to determine a root cause. And even if evaluated, some stillbirths remain unexplainable.
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The Centers for Disease Control and Prevention is developing guidelines to track stillbirths and improve methods for classifying such deaths. The agency is also working with healthcare providers to increase awareness and education on stillbirth evaluation.
The fund offers a Memory Box Program, financial assistance for burials, books in Spanish and English on coping with loss, literature on other resources available to families, and door magnets to identify patient rooms where stillbirths have happened. It looks to raise awareness on how perinatal loss can affect mental health and lower risks for post-traumatic stress disorder and suicide.
In addition to providing support and education, the fund has also led to new policies and procedures. The nonprofit created checklists to help guide medical providers, social workers, and chaplains responding to stillbirths—including what they should (or should not) say to patients.
Timothy Keane said the checklists aim to improve the protocols that were in place when he and his wife lost their son.
“By pulling together the right people over the last 10 years, we’ve been able to improve how these events are handled,” he said. “People are more sensitive to long-term mental health impact than they were 10 or 15 years ago. The combination of the two has allowed us to gain more interest.”