Written by Carol Trager

Parents of a “rare” child constantly search for answers, for direction, for hope. They collect information and advice from a variety of sources, yet they must determine what is legitimate and useful. They become sensitive to every change in their child and must constantly make judgements about what is most important to report or question. All in addition to providing the child’s necessary care and tending to a household that may include siblings and other family members. It is a daunting task indeed.

Yet these efforts help to establish the parent as an expert in their child. They set the stage for conversations with the medical team about care goals: what the future may hold, and how decisions might be made. The conversations can be transformative. The team’s compassion and sensitivity can’t undo a caregiver’s sense of fear and dread, but future-looking information is empowering. With understanding of what to expect both medically and emotionally, parents are better prepared to actively plan for and participate in their child’s care. They find themselves more capable and confident not just in the moment of any particular need or crisis, but also in anticipation of issues and challenges that may lie ahead.

In 2022 Courageous Parents Network (CPN), a nonprofit organization whose mission is to orient and equip parents and others caring for children with a serious medical condition, partnered with Julie Hauer, MD FAAHPM, Boston Children’s Hospital and Seven Hills Pediatric Center; Rachel Thienprayoon, MD MSCS FAAHPM FAAP, Cincinnati Children’s Hospital; and Live Well Collaborative to develop a prognostic guidance tool focused on Severe Neurological Impairment (SNI). The tool would present practical medical and psychosocial content on a range of topics, many not easily or explicitly addressed by others. The content, developed and reviewed by expert clinicians, would be complemented with the voices of parents themselves, via commentary and video. Together these assets would comprise a unique digital resource for educating families, clinicians, and clinician-educators on the unique experience of accompanying a child with SNI.

NeuroJourney (neurojourney.org), launched in late 2023, is designed around the theme “Arc of a Life.” This is a bold statement and reminder that the child’s life, no matter the length of days, can be full and complete. The content is presented in four phases of the illness journey: Adapting to Diagnosis, Building Strengths, Adjusting to Changes, and Navigating Decline. All four phases include both medical considerations (e.g., neurology, gastroenterology, pulmonology, pain, endocrinology, etc.) and social and emotional topics (e.g., goals of care, anticipatory grief, guilt and regret, spirituality, siblings, advance care planning and end of life). As of summer 2024, the content is available in English and Spanish text and audio. Additional languages are forthcoming.

NeuroJourney supports parents in:

• Understanding interconnected medical considerations
• Building their child’s care team
• Reflecting on goals of care and decisions they may encounter
• Communicating with clinicians, family and others

Clinicians employ NeuroJourney in:

• Speaking with parents about the interconnectedness of medical considerations as changes in the central nervous system affect other bodily systems
• Preparing caregivers with anticipatory guidance for the medical, emotional and social issues they may encounter
• Encouraging shared decision-making
• Training clinicians with emphasis on palliative care and palliative-aware practice

Creating and introducing NeuroJourney involved a nationwide team of web developers and experience designers, a palliative care physician, the bereaved parent of a child with Sanfilippo syndrome (producer), and a host of palliative clinicians and other pediatric specialists. Their collective wish is that families and clinicians, and those who educate clinicians, will discover in this tool a starting point for understanding and undertaking the journey; a resource for raising questions and prompting further investigation; reassurance that on the journey no person need be alone; and, most of all, a source of the confidence and hope that they seek.