Dr. Hannah Glass is a pediatric neurologist specializing in neonatal neurology, who serves on Hope for HIE’s Medical Advisory Board.
During her time as a neurology resident in her home country of Canada, Hannah began thinking about where exactly she wanted to have an impact. Not only was the culture of collaboration that existed among multidisciplinary providers in the newborn nursery appealing, but Hannah liked the idea of meaningfully impacting a child’s life right from the very beginning. By working with newborns, she realized that the difference she made would only continue expanding over that child’s lifetime.
In 2006, Hannah came to University of California, San Francisco (UCSF) to do her fellowship and research training in neonatal neurology to learn from experts in the field, such as Dr. Donna Ferriero and Dr. Jim Barkovich. A few years after her arrival to the States, the evidence balance tipped largely in favor of therapeutic hypothermia. Thus, Hannah had the opportunity to help implement a therapeutic hypothermia program and also develop the Neuro-Intensive Care Nursery (NICN) at the UCSF Benioff Children’s Hospital. For over a decade now, she has had the privilege of working with an amazing team of neurologists, neonatologists, and nurses to smoothly run the NICN.
In the NICN, Hannah frequently interacts with HIE families, as children with HIE comprise around a quarter of the patient population. Her communication approach consists of a few key components. For one, Hannah always tries to be as up front with the delivery of medical information as possible. Instead of laying down all the information in one overwhelming family meeting, Hannah talks to families at the bedside on a day-to-day basis. This way, parents have the ability to process news—whether encouraging or worrisome—in digestible chunks. In addition, Hannah is acutely aware that she does not treat children with HIE in silos, instead is only one of the key players on a larger team of providers. Thus, she makes sure that the team in its entirety understands the neurology impression regarding prognosis. Having everyone on the same page in terms of prognosis is key.
On top of ensuring consistency in understanding among the team members, it’s important to ensure consistency in the language used by different providers when discussing neurological findings. When Hannah first helped develop the NICN, significant time was spent educating various staff members, such as nurses, about language they could use to offer the best bedside support possible. Hannah continues to remain proud of how the diverse providers affiliated with UCSF’s neonatal neurocritical care program work together to maintain a strong, united front.
Through her years of training and experience in the NICN, Hannah has discovered a set of best communication practices she uses in difficult family meetings. Optimally, even before a family sits down for a formalized meeting, they already have received some tangible information about how their child is doing. So, first, Hannah always asks family members about their values and their understanding of what has been communicated to them thus far. If there seems to be pieces of the story missing in terms of what a parent has already been able to absorb, Hannah tries to fill those gaps by giving information in a concrete and straightforward manner. She avoids using global statements that definitively portray what a child will and will not be able to do. At the same time, she avoids using the phrase “we just don’t know,” for, in the current era of neonatal neurology, there is so much information that can be garnered from tests, such as the EEG and MRI. Instead of merely stating that HIE is a matter of “wait and see” for long-term outcomes, she arms parents with as much information about what to expect in the near future. She also thinks it is especially important to tell parents what they can do to support their children and stimulate their children’s development, for parents are their children’s best advocates and teachers.
Hannah cannot stress enough the importance that providers tailor conversations to meet the emotional needs of parents. Often, she meets parents who may not be ready to hear or accept bad news. Instead of judging or criticizing them for that, Hannah understands that, in this particular moment in time, parents might need to be in a phase of denial to protect themselves from overwhelming trauma. Hannah tries to feed parents the information they want to hear. If parents don’t want to know the worst-case scenario and, instead, want to keep their eyes focused on all the positives, then Hannah will respect those wishes. Even when parents don’t outright ask for all the positives, Hannah always tries to present information in a balanced manner. No matter how impaired children are, they find their own ways to communicate with their parents and express joy. There is fulfillment to be found in every situation, and Hannah helps families locate those spaces of hope. Ultimately, Hannah has learned that being an empathetic provider means accepting parents where they are in their journeys, giving them the information they need, at the time they need it.
In terms of her research, Hannah studies how to improve developmental outcomes after newborn brain injury. She is a lead investigator for the Neonatal Seizure Registry (NSR), a multicenter longitudinal study that has been following children with neonatal seizures since 2012. Hopefully, through studies such as NSR, researchers can better determine which children will go on to have recurrent seizures after newborn seizures and how those recurrent seizures can be prevented. It is through NSR that Hannah first met Betsy, who serves on the Hope for HIE Parent Advisory Panel, for the meaningful endeavor. When Hannah was asked to join Hope for HIE’s Medical Advisory Board, it was an easy yes, for she sees how important it is for parents to connect with others in the HIE community. It’s given Hannah so much hope to see how the organization has continued to grow over the years. She also has hope that, in the future, different ways to protect and repair the brain, beyond hypothermia, will be identified. She also hopes that more and more centers will learn to use advanced tools, like EEG and MRI, to gain knowledge related to brain injury and rehabilitation, as well as communication so that fewer parents will hear “let’s wait and see how your child does” when they leave the unit. Rather, more families will be given a range of expectations and a list of things they can do to support their child’s development.
To parents, clinicians, and researchers alike, Hannah would leave them with this message: There is so much that we still don’t know about the developing brain , but that itself is a key source of hope. If we make a commitment to keep learning and exploring, our knowledge of the brain will only continue to expand over the coming years, leading to more effective prevention and treatment efforts.
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