Evelyn Mascarenas. LCSW, has been a social worker for almost sixteen years, gaining firsthand insight into the complexities of the psychosocial needs of NICU families. She brings her unique perspective as a social worker to Hope for HIE’s Medical Advisory Board.
As an intern during graduate school, Evelyn was exposed to the hospital setting in a macro capacity, working in policy development and grant-writing roles. After her schooling, Evelyn knew she wanted to go back to working in the healthcare setting. Thus, when a job opportunity to serve as a maternal and child health social worker in a delivery hospital with a level-two NICU opened up, it seemed as if fate had called her name. Evelyn wouldn’t say that she found the field of NICU social work, but rather that the field found her, bestowing her with a sense of purpose she hadn’t even known she was searching for.
The clinical role she found herself in at the Children’s Hospital of Los Angeles was certainly different from anything she had experienced during her internship, but, to her, it was rewarding on multiple levels. On a personal level, Evelyn’s grandmother had suffered multiple perinatal losses in her younger years. Although her grandmother rarely outwardly expressed her grief, Evelyn learned to appreciate the depth of a loss parent’s grief through her new position. Acknowledging how difficult it was for her grandmother to experience such trauma, with no real structural support available, Evelyn was motivated by the desire to ensure that none of the families she interacted with felt that same isolation.
As she continued following patients from the antepartum through the postpartum period, Evelyn’s curiosity was sparked whenever she met a family whose baby had to be transferred to a higher-level NICU for more comprehensive care. Who was tending to the needs of those families with the most medically complex babies, who were enduring, perhaps, the scariest experiences of their lives?
When she moved back home to Northern California, she started a new position at a hospital with the highest-level NICU so that she could get that exposure she craved. Now, Evelyn works in a fast-paced NICU, serving a community that is composed primarily of low-income families of color, many who are Spanish-speaking. Evelyn loves helping these families—many with HIE babies—navigate the complex challenges they face, acting as the bridge between them and the medical team.
Given that those first days are so overwhelming and tumultuous, it can be especially hard for HIE families to truly process everything in the moment. Thus, when Evelyn gets to know HIE parents, she first checks to see if they understand the information about the cooling process and their baby’s MRI that they have already been provided with. On top of helping demystify medical information, Evelyn also encourages families to continue to hope for the best, even after receiving news of a serious brain injury, for long-term outcomes are nearly impossible to predict so early on.
Simultaneously, she balances validating the anxiety and grief parents face with empowering them to love and interact with their child as they had envisioned prior to the hypoxic event. In every situation, Evelyn believes there is always a silver lining, so she does her best to help families pinpoint what that silver lining looks like for them—whether it is gratitude for the fact that their child made eye contact with them for the first time or was finally fed by mouth. To help parents cope with all the anticipatory grief they face, Evelyn encourages them to journal their daily experiences and to really live in the moment, celebrating the milestones of today instead of the deficits of tomorrow.
Time and time again, Evelyn has witnessed how much of a difference it makes when HIE parents are able to connect with families who have walked down a similar path. So, she prompts the parents she helps to interact with others in the HIE community, whether by joining Hope for HIE or by taking their children to playgroups. Because the pandemic has only exacerbated the isolation many parents felt in the wake of an HIE event, Evelyn now, more than ever, emphasizes the importance of ongoing socialization. In times when in-person social interactions may not be as feasible, Evelyn is grateful that organizations, such as Hope for HIE, allow HIE parents to forge those essential relationships virtually.
Evelyn has learned so much through her role as a social worker. Every day, she continues to be both humbled and challenged by the indisputable fact that no two cases are the same—each family has its own unique challenges and gifts. In the midst of such chaos in the hectic unit, Evelyn reminds herself to stay grounded and centered with the family she is working with in the current moment. To other social workers, and providers in general, Evelyn recommends they take the time to get to know the story of each patient, independent of the other patients on the unit. Show patience by repeating information using multiple different tools, such as images, for parents under stress may not immediately remember everything explained to them at a family conference. After that, have parents reiterate what you told them, as active recall can cement understanding.
Most of all, Evelyn hopes providers will acknowledge that, even if they are considered experts in their field, their education is ongoing. There is always so much to learn, whether it is about diversity, equity, and inclusion; the common mental health diagnoses that NICU parents face; or how to engage in trauma-informed care. Only through a commitment to actively listen to and learn from families can providers truly offer the most comprehensive, well-informed, individualized care possible.
When Evelyn has had a particularly rough day or has dealt with a tough caseload, she draws inspiration from the fact that she is able to offer families interdisciplinary support that was unheard of in her grandmother’s time. To be able to walk alongside families through all the heartbreak of having a medically fragile baby—to remind them that they are never truly alone—is at its core an unparalleled reward.
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