The NICU Experience: Growth and Resilience
Allie Hexley, OSC Science Writing Intern
The Newborn Intensive Care Unit (NICU) at Brigham and Women’s Hospital (BWH) is the largest NICU in Massachusetts, providing intensive medical care for premature and seriously ill babies and their families. In addition to internationally-recognized neonatologists and expert nursing staff, BWH NICU social workers are there for patients before, during, or after a baby’s discharge as well as when a parent’s worst fears are realized, and an infant’s medical issues are so extensive that a family loses their baby.
“Being a social worker in the NICU is a really unique role,” said Kaitlyn “Kate” Basile, MSW, LICSW. “We get the chance to develop a strong relationship with the families as we work with them for longer periods of time, during some of the most difficult times of their lives. Our job is to support them through this stressful time and help prepare them for life with their baby after they leave the NICU.”
There are many ways that NICU social workers provide support for parents with a child in the NICU, but they all focus on one, key idea: normalizing the NICU experience for families.
“Most parents don’t know anyone else who has experienced having a baby in the NICU,” said Kate. Kate’s colleague, Susan Berliner, LICSW, who has been working in BWH’s NICU for eight years, added, “Our goal is to try to help parents shift their expectations of what the newborn experience is going to be. We have three Family Support Specialists, all of whom are former NICU parents, to help provide guidance. We remind parents that it is ok for them to ask the same question every time we see them – with the stress of their new situation, it’s normal for them to struggle to retain all the information they must digest daily. We also share resources that are available and let them know they are not alone.”
Kate and Susan aim to encourage families to play an increasingly significant role in their baby’s care. Communication is key, so Kate and Susan participate in formal, family meetings, which include other members of the care team such as the attending neonatologist and bedside nurses, in addition to specialists from other departments such as respiratory therapists. These meetings ensure all members of the newborn’s care team are on the same page. These interdisciplinary huddles also help parents feel like a part of that care team – a crucial step on the path to discharge when they will take over providing
care for their infant. The NICU social workers also participate in hospital team meetings during which they have an opportunity to support the NICU physicians and nurses in what can be an intense
and stressful environment.
In addition to often serving as a bridge for communication, Kate and Susan connect parents with a range of services, both within the hospital and in the community, including counseling and support groups, “to ensure parents feel supported at all stages of the NICU experience,” Susan said.
NICU social workers also encourage families to engage in activities provided by the Family Support Specialists that promote education, stress reduction and camaraderie. A recent activity in the NICU involved parents making personalized “onesies” for their newborns. Other activities include Mother’s and Father’s Day celebrations, scrapbooking and evening family social occasions. These activities ensure parents feel involved in their newborn’s lives, even though they are not experiencing the typical newborn experience. These activities also encourage bonding between NICU parents to help them feel less isolated.
The NICU social workers are constantly seeking new methods to support parents and recently collaborated with BWH iHub to develop a prototype for an app to assist parents with the NICU journey. They hope the app, once completed, will help to decrease parents’ stress by providing a resource for them to find answers to frequently asked questions, a place to keep a journal of their own experience and information about relevant resources both within and outside BWH.
“The work we get to do is really special and really profound,” said Kate. “While it can be stressful and challenging, especially when supporting families who are experiencing loss, it is a privilege and very rewarding to be able to be there for all these families and witness the growth and resilience they experience through the NICU journey,” added Susan.