Supporting Families Experiencing Infant Illness or Loss

20,000 babies died in 2020.

According to the Centers for Disease Control and Prevention, the most common causes of infant deaths in 2020 were birth defects, preterm birth and low-birth weight, and sudden infant death syndrome. And like maternal mortality, racial inequities play a significant part in infant mortality. In fact, the infant mortality rate is 2.4 times more in Black populations, and the preterm birth rate is 52% higher for Black women than for all other women in the United States.

Every year, 10%-15% of babies are admitted to the neonatal intensive care unit (NICU). Having a baby in the NICU takes a psychological toll on the mom and family. Women whose infants became hospitalized in the NICU for less than two weeks are 19% more likely to be diagnosed with a mental health condition. For infants hospitalized for more than two weeks, it increases to 37%. Despite higher rates of NICU hospitalization, Black and Hispanic women have significantly lower odds of seeking care and receiving a maternal mental health condition diagnosis.

Lack of recognition and treatment of maternal mental health conditions can be detrimental to the well-being of the parent and baby. At the 2023 Maternal Mental Forum hosted by The Policy Center for Maternal Mental Health (formerly known as 2020 Mom), I spoke with Dell Children’s Medical Center, Hand to Hold and Northwest Community Healthcare on ways to provide support and resources for families affected by infant loss and NICU admission.

Rachel Astorga-McCain joined Hand to Hold® after experiencing the exhausting emotional and physical toll of her daughter’s 81-day NICU stay. Local to Texas, Hand to Hold® provides evidence-based, personalized support before, during and after a NICU stay to ensure all NICU and bereaved families thrive. Astorga-McCain explained early intervention support for parents reduces feelings of isolation while increasing confidence and opportunities for bonding, all which support a healthy beginning for a baby.

Hand to Hold provides support services across the country — both virtually and in-person. Services range from 1-on-1 interactions to personalized support groups, educational resources, podcasts and a mobile app to increase equitable access to free support. In-hospital support is staffed by family support specialists who are certified mental health peer specialists with lived experience, who work alongside the medical, social work and pastoral care teams.

“Access to mental health care should be treated as if it is of equal importance to medical health care,” explained John D. Loyd, M.D., MPH, chief of the Division of Neonatology for Dell Children’s Medical Center. Loyd shared the medical center partnered with Hand to Hold in 2021 to bring support services to the NICU. An integrated mental health team including a social worker, psychologist and psychiatrist, along with nurse navigators assess the needs of families and connect them with resources. Additionally, the hospital has a hotline for clinician-to-clinician consultation for providers serving pregnant women and new mothers experiencing mental health distress.

“The partnership with Hand to Hold has allowed providers a better understanding of different ways to support NICU parents and families and more time to focus on the care of the baby,” shared Loyd. Supporting new parents during this challenging time helps both care providers and families. Hand to Hold found without a Family Support Specialist, 4.2 hours per week/nurse on average would be added to the workload. Additionally, support group participants shared they feel more confident as caregivers post a session.

Northwest Community Healthcare has been supporting families across the continuum of perinatal loss since 1990. Over the years, Northwest’s infant loss and bereavement program has expanded from labor and delivery and NICU to cover early losses in the emergency department, operating room, day surgery and even perinatal palliative care. Obstetric patients and families are introduced to care coordinators and grief support services upon admission, no matter the outcome. Resources are offered for nearly one year after an infant loss, and families come together for memorial services, such as Annual Butterfly Release and Walk to Remember.

Jill Kottmeier, director of Well-being and Bereavement Services explained, “It is important we build a trusting relationship with our patients upon admission and while in the NICU. We must also step out of judgment, and honor culture and faith when offering support.” She also emphasized the importance of understanding that not everyone will be receptive to support as they are grieving, so “we have to meet people where they are.”

Supporting parents and families during such a vulnerable time is crucial for their emotional well-being. “We have to equip our staff and facilities to provide such resources to help parents feel hopeful and less alone in this journey,” concluded Astorga-McCain.

Does your hospital have resources in place to support NICU and infant loss parents and families? Email me at saisha@aha.org and share your best practices.