Supporting Families through Pregnancy and Infant Loss

This October, we join hundreds of thousands of families across the country to recognize National Pregnancy and Infant Loss Awareness Month and raise awareness of stillbirth, miscarriage, and infant losses. Each year in the United States, more than one million fetuses die before birth and four in 1,000 babies die in the first 28 days of life.

At Children’s Hospital of Philadelphia’s Center for Fetal Diagnosis and Treatment (CFDT), a fetal diagnostic and therapy center dedicated to mothers carrying fetuses with known birth defects, we see firsthand how devastating it is for families to lose a child before or shortly after birth. Out of the 1,200 annual new patient evaluations completed at the CFDT, approximately 14% will experience the loss of a pregnancy or the death of a child prior to the first year of life.

Parents experiencing a pregnancy or infant loss need ongoing support, yet their grief is poorly acknowledged by our society. Our CFDT Perinatal Palliative Care and Bereavement Program is one of few dedicated programs of its kind that offers universal bereavement outreach services following perinatal loss.

In a paper presented at the 38th Annual Meeting of the International Fetal Medicine and Surgery Society in Switzerland in October 2019, Joanna C.M. Cole, PhD, PMH-C, clinical psychologist and manager of psychosocial services at the Center for Fetal Diagnosis and Treatment, described the creation of the center’s bereavement program. The paper was recently published in the journal Fetal Diagnosis and Therapy in an effort to help guide other fetal care centers in standardizing perinatal bereavement outreach services.

The CFDT’s Perinatal Palliative Care and Bereavement Program team — which consists of a fetal therapy nurse coordinator, advanced practice provider, maternal-fetal medicine physician, neonatologist, social worker, child life specialist, chaplain, resource coordinator, and clinical psychologist — helps families prepare for the loss of their precious baby when a life-limiting diagnosis is confirmed as well as when an unexpected neonatal death occurs. The team helps families develop a supportive palliative care birth plan, offers memory making opportunities at the time of birth, remains in contact with families throughout the first-year post-loss to help them cope with grief in the days and months that follow, and connects them with additional services and community resources, if needed. At the one-year anniversary post-loss, our team connects all families to CHOP's hospital-wide Evenstar Bereavement Program.

“Our hope this month is to help break the silence surrounding stillbirth and other pregnancy/infant losses,” says Cole. “We also hope that this blueprint for how we created our program will help other centers create a supportive perinatal palliative care and bereavement program.”