Caring for Children Who Have Severe Neurological Impairment: A Life with Grace (A Johns Hopkins Press Health Book)
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 Graceis 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)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 Graceis highly recommended and should be on the bookshelf of every parent dealing with complex medical issues.(Susan AgrawalComplex Child)