Dr. Janet Soul is a pediatric neurologist on Hope for HIE’s Medical Advisory Board, specializing in fetal and neonatal neurology with a focus on the etiology, pathogenesis, outcome, and prevention of early acquired brain injury.
As a medical student where she grew up in Montreal, Canada, Janet was sure she wanted to become an adult neurologist. However, after realizing how fascinating the opportunity for neuroplasticity and recovery was in the younger patient population, Janet decided to shift course. After medical school, she came to Boston to continue her training, first through a residency in pediatrics, and subsequently through a fellowship in neurology. During the time she was a fellow at Boston Children’s Hospital, Dr. Joseph Volpe—considered to have founded the field of neonatal neurology—was the chairman of the neurology department. Janet, attracted by his work, as well as the cardiorespiratory physiology involved in conditions like HIE and congenital heart disease, decided to do an added year of fellowship specifically devoted to neonatal neurology. Although Janet always planned on returning home after training, she ended up staying at Boston Children’s Hospital, where she has been working ever since.
Now, she directs the Fetal-Neonatal Neurology Program that offers comprehensive care to fetuses, newborns, and children with neurologic disorders, both during their NICU stays and post-discharge through the follow-up clinic. Janet serves as the neonatal neurology lead for managing children with HIE at Boston Children’s Hospital, as well as at the two adjacent NICUs at Brigham and Women’s Hospital and Beth Israel Deaconess Medical Center. On top of clinical services, this Fetal-Neonatal Neurology Program includes specialized training for neurology, neonatology, and pediatric fellows and residents. Thus, alongside her research and clinical work, Janet spends time teaching the next generation of providers how to care for HIE babies and their families.
Leading difficult conversations amid prognostic uncertainty is no easy task, so Janet makes sure to emphasize some key communication tactics when she lectures to residents. First, Janet believes it is incredibly important to gain an understanding of a family’s background and where they are in their journeys before she does any sort of counseling. Prior to meeting a family, she will ask other providers, such as neonatologists and nurses, what information they have already provided that family with. When meeting a family, Janet will explicitly ask them what they have understood thus far and what information they would still like to know. This way, she can tailor conversations to align with the unique wishes of families, making sure she is only giving families the information they are ready and willing to hear.
To residents, Janet always drives home the point that, in any clinical encounter, there are two different agendas. There is the provider’s agenda, which is figuring out what a child’s neurological disorder is and how to appropriately treat it. And then there is the parent’s agenda, which may be different from what providers often assume it will be. To bridge these two agendas together, it’s invaluable to find out what families feel would be most helpful to them. Ultimately, it is their baby.
Furthermore, Janet hopes to instill in the residents an understanding that checking in on the mental health of parents is integral to providing optimal care for the babies they treat. Because there is so much postpartum depression, even among mothers of healthy babies, it’s vital to ask parents how they’re doing and to recognize what the symptoms of common mental health disorders look like.
In terms of built-in support systems in the NICU, there is a pediatric advanced care team that helps families whose babies are either critically ill or going to die make decisions that will optimize quality of life. The team also spends a significant amount of time walking alongside parents through the grieving process and referring them to longer-term mental health counseling. Without listening to the voices and stories of HIE parents, it’s impossible for the medical community to know what families truly need, whether in terms of emotional or logistical support. Thus, Janet is glad to serve on the medical advisory board of organizations, such as Hope for HIE, that are working toward shedding light on the parent perspective.
Throughout her career trajectory, Janet has seen so much hope in practice, both through her research endeavors, as well as her interactions with many amazing HIE families. One of the signature memories of her career, regarding HIE, was being there to cool the first baby at Boston Children’s Hospital. After all the hard work she and her colleagues put into designing and tweaking the cooling protocol, it was so exciting that the first baby arrived in the middle of the day, when everyone could be there to observe the groundbreaking moment. The advent of cooling truly was revolutionary, for they were finally able to offer families a therapy instead of just comfort care. Currently, Janet continues to refine the protocol for hypothermic cooling, focusing on figuring out ways to identify babies who will benefit from the treatment from those who won’t.
Another of her major research interests is the treatment of neonatal seizures. Given the substantial evidence that suggests seizures can worsen the brain injury that occurs due to HIE, pinpointing ways to effectively treat seizures could, in a sense, serve as a neuroprotective therapy for the HIE patient population. Yet, the medications that currently exist are not nearly as competent as they should be. It’s certainly discouraging, but there are already research investigations underway which hold promise for the future of neonatal seizure treatment. For instance, Janet is currently the lead investigator for a randomized, double-blind, controlled trial that is the first to study a novel drug called bumetanide with an anticonvulsant mechanism specific to the newborn brain.
Ultimately, what sustains Janet is her desire to do whatever she can to make things better for the babies and incredible families she meets. When Janet is disappointed with negative results in her research, or when she feels overwhelmed with all the tasks on her plate, she remembers how much hope she feels when she sees babies exceeding all expectations about how well they will do. She remembers how unbelievable it is to witness how families are able to show resilience and find their own versions of joy, even when they started in places that were initially very dark.
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