This book is the result of thousands of encounters with tube-fed infants and their families over the past four decades. The ailing and fragile children, suffering from a myriad of medical conditions acted as muses and mentors teaching more than could be expected. This book is addressed to medical professionals, early interventionists, pediatricians, child surgeons, nurses, dieticians, occupational therapists, speech and language pathologists (SLPs), feeding specialists, psychologists, physiotherapists, infant psychiatrists as well as parents. The medically fragile child (MFC) is the subject of the authors work when it is concerned with enteral nutrition support (ENS) by means of a feeding tube (ENT). As pediatricians and psychotherapists, they have been treating eating and feeding disorders of children since 1986 and with this book they pass on knowledge they have garnered over three decades. Over 5,000 children have been weaned off their feeding tubes. Tube weaning requires the evaluation of medical, nutritional, sensory, developmental, metabolic and growth-related findings.

The review of the literature around this subject has provided a source of inspiration as well as critical self-reflection; the authors wish to offer their insight and ideas on how to approach child-led tube-management and tube-weaning to all healthcare professional involved in the management of these children.

Marguerite Dunitz-Scheer, MD, born 1955 in Washington DC, studied medicine in Zurich and Graz. During her studies she spent a year at the Child Psychiatric Unit of Mc Leans Hospital in Boston and took courses at Harvard Medical School. She graduated in 1981 and completed her specialization in pediatrics in 1986. Since 1991 she is psychotherapist (Gestalt) and holds a degree in institutional management. From 1994 to 2017, she was assistant professor and deputy head of Psychosomatics at the Pediatric Hospital of the Medical University Graz. Since 2009 she is Medical Director at Notube.com. She ran the Psychosomatic division together with her husband Peter Scheer. This in- and out-patient unit had a special focus on feeding disorders and tube dependency. It enjoyed international reputation with referrals from all over the world. She is a lecturer at international conferences and has published extensively on the subject. She is a founding member and past president of the German Speaking Association of Infant Mental Health (GAIMH), member of WAIMH and was task force member of DC 0-3R. Music was an important part of her life and directed childrens operas for 15 years. 

 

Peter Scheer, MD born 1951 in Tel Aviv studied medicine and philosophy in Vienna. He graduated in 1975 and completed his specialization in pediatrics in 1983. He became Adlerian individual and group-therapist, additionally teaching-trainer in group-dynamics. Next to his medical profession he was assigned as a guest professor at the Vienna University for Business, Department for Change Management and Management Development and guest professor at the theological faculty. At the Medical University Graz he was head of the Psychosomatic Division at the Pediatric Hospital. He was director for the internship part of the study of psychotherapy. He was assigned as medical director at a rehabilitation center in Zingst, Germany. He is as a deputy medical director at Notube and member of the executive board. Peter Scheer wrote books on Eating disorders, family dynamics and aging. He published over 170 scientific articles in pediatrics focusing mostly of psychosomatics. He was awarded the Austrian Honor Cross for Science and Art and the Grand Medal of Honor of Styria as well as of Austria. 

Peter (Ronny) and Marguerite married in 1997, raised eight children and three forster children in their patchwork-family and are grandparents of 14 grandchildren.  

The fascination of eating development.- Presentation of the EAT-concept.- How eating development can get stuck.- Focus on the child itself.- The composition and task of the feeding-team.- The assessment of functional aspects before tube placement.- Temporary versus permanent ENT.- Taking care of oral skills during ENT.- Nutritional aspects.- Unintended side-effects of ENT.- Tube management and maintenance.- Major diagnostic groups receiving ENT.- Tube dependence.- The specific role of the individual professions within the feeding team.- Tube weaning.- Play picnics and making food worlds.- Common obstacles due to specific conditions and special needs.- What happens afterwards? A new life for children and parents.- Outlook.