Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy


Dr. Monica Lemmon’s Story: Strengthening the Bridge Between Parents & Providers

April 30th, 2022  | HIElights of Hope

Since she was about six years old, Monica dreamed of becoming a doctor. However, it wasn’t until she was well into her fourth year at Harvard Medical School, right before residency applications were due, that she first interacted with the field of neonatal neurology. At the time, Monica was all set to become a general pediatrician. But, upon beginning a rotation at Boston Children’s Hospital in pediatric neurology to fulfill her requirements, she immediately fell in love with the population of patients she was interacting with. Monica decided to turn the rotation into a more rigorous sub-internship, to truly find out whether this field was a good fit for her.

A few days into her service in the neonatal intensive care unit, she realized that this was exactly where she wanted to be. Monica felt deeply drawn to the provider-family relationships, ethical dilemmas, and disease processes that define the field. When she thought about how a major proportion of the pediatric neurology population began their journeys in the NICU, that felt like the right place to focus her efforts. So, after training in child neurology for many years, she did a more specialized fellowship in neonatal neurology.

Monica’s research interests also evolved as her training went on. Initially in her residency, she was interested in imaging biomarkers of neonatal neurologic prognosis. While such research is very much needed, it wasn’t what truly excited Monica. Then, during her fellowship year, Monica was flooded with the realization that one of the major gaps in the field centered around how clinicians could best communicate prognostic information to parents and empower parents to make well-informed decisions regarding their child’s care. Communicating amid prognostic uncertainty was a skill that Monica herself felt daunted by. Recognizing that there wasn’t enough literature or training to support well-intentioned clinicians who truly wanted to help families process difficult news, Monica set out to define those best communication practices she was searching for. Now, the current research focus at her laboratory encompasses just that—parent-clinician communication and decision-making for children with neurologic conditions.

Monica has been at Duke for the past five years, where she splits her time between research, teaching, and clinical care. She serves as the director of Duke’s Fetal and Neonatal Neurology program, where she is grateful to have the opportunity to follow families longitudinally from pregnancy through early childhood, in both the inpatient and outpatient settings. Through both her research and clinical encounters, Monica has noticed that, especially with HIE, communication is often fragmented between the team and family members. This poses a major issue, as consistent communication centered around the big picture is a vital part of care.

The NICU experience is already confusing enough, but there are key ways to offer parents as much comfort as possible. For instance, it’s important to give parents information from providers they already have established relationships with, such as primary neonatologists and primary nurses. For some families, bringing in a palliative care team can provide an extra layer of necessary support.

When Monica interacts with families, she makes an intentional effort to avoid the use of jargon, instead using words that are simple and easy for families without a medical background to understand. She has also realized that it can be extremely overwhelming for HIE families to process the idea that they won’t know what the future holds for some period of time. Families appreciate when she names that uncertainty and the distress associated with it. But, on top of merely naming the uncertainty, Monica tries to offer that this doesn’t last forever and that, together, they will revisit what is known about prognosis periodically. By having those regular touch points, that wide range of potential outcomes will be narrowed as time goes on.

Monica has noticed that what providers view as the worst-case scenario often does not align with what parents view as the worst-case scenario. Clinicians tend to be focused on literature that suggests impairment, highlighting a child’s deficits more so than their capabilities. She would encourage parents to ask clinicians to walk them through multiple hypotheticals, such as the “worst” case, “best” case, and “most likely” scenarios, recognizing that uncertainty exists, even within each of those categories. She would also tell parents that, if the information they receive isn’t as balanced as they would like, don’t hesitate to ask what their child might also be able to do in the future.

In her own patient population, Monica has seen the profound need to connect with other families impacted by HIE. When she first learned about Hope for HIE, she was excited to have such a targeted resource to offer to her HIE patients. But it wasn’t until she connected directly with Betsy, Hope for HIE’s Executive Director, that she began to understand the organization’s commitment to scientific integrity, inclusion of diverse voices, and interest in partnering with research organizations. Since joining the Medical Advisory Board, Monica has witnessed how much progress can be made when parents and providers from multiple disciplines collaborate with each other. She is excited to see how, in the future, peer support networks, such as Hope for HIE, will continue to become more integrated with the academic research infrastructure and clinical care. Through such partnerships, HIE families of the future can receive even better real-time support from parents who have lived through similar journeys. Because the burden of depression, anxiety, and PTSD symptoms is extremely high among the NICU parent population, Monica would also love to see hospitals offer uniform mental health screening early on in the admission process. By identifying and normalizing mental health problems as part of the experience for many families, perhaps parents won’t feel pressured to suffer in silence.

Hope does not only fuel HIE parents in their daily lives, but it fuels clinicians as well. Monica hopes she can help children and families thrive, regardless of neurodevelopmental outcome. She hopes that she can be part of the cause to encourage parents and clinicians to identify and celebrate the strengths of all children. For Monica, learning how to reorient her hope and reminding herself that hope is in the journey has been a really humbling aspect of serving the HIE population. Yes, Monica’s role is to provide families with medical information. But an equally important role is also to walk alongside families, celebrating and hoping with them no matter what their journey looks like.

While it’s been an immense honor and privilege for Monica to care for children with profound needs and support families through their darkest days, constantly leading those serious conversations can be mentally draining. There are many times when Monica has cried during or after conversations with families, for witnessing the strength of HIE parents throughout the process is remarkable. Yet, she wishes they weren’t put in a position where they need to be so strong. To balance being present for families suffering loss, while also having the composure to move on to the next patient room, Monica creates spaces outside of work to honor and remember her patients who have died. There is no singular way to engage in this meaning-making. She knows colleagues who have tried a variety of different things, ranging from creating gardens to creating music. On top of having these dedicated spaces, Monica also practices self-care by spending time with her favorite people in the world—her two vibrant children and her wonderful husband. As a family, they love spending time outdoors, listening to music, having dance parties, and playing board games.

Through her clinical encounters with HIE families, research, and involvement with Hope for HIE, Monica has learned what good communication, support, and hope truly look like in practice. She has learned that exercising humility and unconditionally rooting care in alignment with parental values is what sets apart a merely knowledgeable clinician from a truly great clinician.



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