Caring for Children Who Have Severe Neurological Impairment: A Life with Grace (A Johns Hopkins Press Health Book)

Caring for Children Who Have Severe Neurological Impairment. . . is the only book that has even made an attempt to tackle this difficult topic in any meaningful sort of way. The author has succeeded in creating what should become the caregiving Bible for any family of a child with severe neurological impairment regardless of diagnosis, or any medical provider for this population. . . The information provided, and the approaches recommended, are too important to be overlooked. . . Caring for Children Who Have Severe Neurological Impairment: A Life with Grace is highly recommended and should be on the bookshelf of every parent dealing with complex medical issues.
―Susan Agrawal, Complex Child

For the health-care professional who provides care or interaction at any level to SNI patients, this books is a valuable resource. This is also a great resource to refer to family members and care givers. It helps with understanding and assists with developing questions for the health-care team. The family members reading this book will increase their abilities to advocate for their child's medical, social, and emotional needs. It provides tools and information that promotes dignity and respect for life in all its phases.
―Marilyn Mills, Journal of Radiology Nursing

This unique book provides detailed scientific information that is carefully explained in a gentle and thoughtful manner. This book provides a much needed resource for families struggling to stay informed and make decisions for their children. It also is a new and essential resource for pediatric palliative care professionals who walk alongside families as guides.
―Jody Chrastek, DNP, RN, CHPN, Children’s Hospitals and Clinics of Minnesota

Framing by symptoms, not diseases, Dr. Hauer gives practical diagnostic and therapeutic approaches to the most challenging problems faced by children with severe neurological impairment. Grounded in compassion, experience, and family-centered care, Caring for Children Who Have Severe Neurological Impairment: A Life with Grace is a must-read.
―Rishi Agrawal, MD, MPH, Academic Pediatric Association Complex Care Special Interest Group

Julie’s compassion for the struggles of families with children who have SNI and her concern for the quality of life of every patient who has SNI comes through. She conquers the complexity of combining all aspects of care―pain, GI, respiratory, spasticity, seizures, medications, end-of-life issues, and more―for patients who have SNI at all levels of involvement. Complex care issues combined with optimal quality of life information makes this a must-read for caregivers of those who have SNI―parents and clinicians alike.
―Dean and Teryn Suhr, MLD Foundation

The realities of children living with severe neurological impairments is two-fold: a side of difficulties and dark moments, and a side of joy and light. Dr. Julie Hauer attends to both sides in this book, as she has done for every patient and family she has encountered over the years of her career as an esteemed and beloved physician devoted to the care of children with major medical problems.
―From the Foreword by Chris Feudtner, MD, PhD, MPH, The Children’s Hospital of Philadelphia

An expert physician empowers parents to make informed decisions about their child’s care.

Global impairment of the central nervous system, whether stable or progressive, is often called severe neurological impairment (SNI). A child who has SNI will be cared for both by specialist clinicians and by parents at home. A parent is a child’s best expert and advocate, and many parents become highly skilled in managing their child's care. This guide provides information to help parents increase their knowledge and improve their caregiving skills.

In Caring for Children Who Have Severe Neurological Impairment, Dr. Julie M. Hauer advocates shared decision making between family caregivers and healthcare providers. She details aspects of medical care such as pain, sleep, feeding, and respiratory problems that will be particularly useful to parents. Tables and key points summarize discussions for clear, quick reference, while case studies and stories illustrate how different families approach decision making, communication, care plans, and informed consent.

Parents and other caregivers will find this book to be indispensable—as will bioethicists and clinicians in pediatrics, neurology, physical and rehabilitative medicine, palliative care, and others who care for children with neurological and neuromuscular disorders. Dr. Hauer offers hope and practical coping strategies in equal measure.

The realities of children living with severe neurological impairments is two-fold: a side of difficulties and dark moments, and a side of joy and light. Dr. Julie Hauer attends to both sides in this book, as she has done for every patient and family she has encountered over the years of her career as an esteemed and beloved physician devoted to the care of children with major medical problems.

An expert physician empowers parents to make informed decisions about their child’s care.

Julie M. Hauer, M.D., is an assistant professor, medical director of Seven Hills Pediatric Center, and a staff member in General Pediatrics, Complex Care Service, at Boston Children’s Hospital Harvard Medical School.