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Dr. Sue Hall serves on Hope for HIE’s Medical Advisory Board and has been a neonatologist for over thirty years. Before that, she worked as a master’s level social worker. She completed training in pediatrics and neonatology at the Children’s Mercy Hospital in Kansas City, Missouri, before joining the faculty at UCLA’s David Geffen School of Medicine, where she was affiliated for nineteen years. Now retired from private practice at a community hospital NICU in Southern California, Dr. Hall has served as a board member of the National Perinatal Association and has numerous publications in the scientific literature on the topic of psychosocial support of NICU parents. She is the lead creator of content at My Perinatal Network and My NICU Network, which are platforms providing education for healthcare staff in the perinatal space focusing on psychosocial support of families. She is also the author of a book about life in the NICU, titled For the Love of Babies, published in June 2011.
In her time as a neonatologist, Sue interacted with numerous HIE families. Especially for babies in the gray area, she realized that finding that delicate balance between the fear that parents have and the hope that she wanted them to have was tricky. But as difficult as these conversations were, Sue made sure to use a multitude of good communication practices that she now emphasizes to others in the medical community through her work with the National Perinatal Association.
First, she advises providers to form authentic connections with families, entering a conversation as a supporter rather than just as a technician. Instead of talking down to parents with jargon-filled dialogue, she recommends using understandable language, asking parents about their emotions and concerns, and encouraging parents to bond with their babies.
In addition, another big concept she teaches to providers is to let parents feel whatever they are feeling. There is no one-size-fits-all look to grief, advises letting parents know that they are justified in being upset, disappointed, or angry when their dreams for the future fall out of reach. But amidst of all the grief, providers should encourage parents to find hope, even if that hope needs to shift to align with the reality of a situation.
Finally, Sue encourages clinicians to engage in storytelling, a personal interest of hers. By taking the time to fully listen to and absorb the stories of patients, Sue believes that clinicians can better walk in the shoes of those they treat and, thus, become more empathetic in their interactions. The growing space of narrative medicine has the potential to tremendously improve patient-provider communication, which is one of the reasons Sue published an anthology of short stories from her time in the NICU.
Given her unique background as both a social worker and a neonatologist, Sue is proud of her efforts to educate practitioners about the intersection of medical care and psychosocial support for families in the NICU. In collaboration with a researcher at Stanford (Dr. Melissa Scala), Sue recently wrapped up a study where 100 neonatal fellows completed a special version of the educational course designed in collaboration with the National Perinatal Association and the NICU Parent Network. Through the course, neonatal fellows were able to increase their confidence in interacting with families. Participating in exercises simulating everyday situations that occur in the NICU was an additional methodology used. In the exercises, fellows responded to scenarios, such as a mother being upset after she has been told her baby’s discharge date was delayed due to an apneic event. Sue is passionate about this work, for it is vital that the next generation of providers enters the field with a focus on treating the family as a whole, instead of just the baby.
Another core component of the training is the emphasis on staff support on multiple levels. On one level, just the act of practicing communication skills has the potential to lower stress levels, and thus burnout, among providers. On another level, the training more directly identifies ways providers can engage in self-care. For instance, having debriefs, where the team comes together to discuss and mentally digest something that could have gone better, are encouraged.
Though Sue has since retired from her role in clinical care, she has hope that the care and treatments offered to HIE children and families will only continue to improve. When she first started her medical career in the early 1980s—before the advent of treatments and technology, such as surfactant, the ECMO machine, and hypothermic cooling—death was a constant presence in the NICU. But since then, the progress she witnessed along the way was nothing short of amazing. New technologies were developed that highlighted how resilient babies and families could be, and Sue no longer had to face death on a daily basis.
In the future, Sue hopes that this momentum will expand to include improvements in the aftercare of babies once they are discharged from the NICU. Right now, parents often have to wait for months to find out that a developmental milestone has been missed. If there was a standard protocol for all the follow-up appointments that parents need to make, right from the get-go, perhaps HIE families would feel more secure, knowing that all the services they need are accessible to them.
Sue would tell HIE parents that she cannot imagine how difficult it must be to have all of their expectations go awry. Fighting against a diagnosis or wondering why this happened to you, of all people, are normal reactions. And yet, a universal truth is that, the sooner you adjust to the life you have now, instead of the life you pictured for yourself and your child, the easier your road traveled will be. Never lose sight of the hope that exists in the context of your unique circumstances.
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