Gastrointestinal Issues and Feeding Tubes in the CHD Community
Christie Saunders is a wife and mother of four children. Her third child, Bennet, was born August 24, 2012. He was undiagnosed with any heart conditions in utero. Much to Christie and her husband’s shock and dismay, when Bennet was 24 hours old he was diagnosed with hypoplastic left heart syndrome. He had his Norwood Surgery at 5 days old and had a typical “bumpy” recovery. At 5 weeks old he underwent a Nissen fundoplication and G-tube placement due to severe gastrointestinal (or GI) issues. After many tears and much struggle he was successfully weaned from his tube when he was 18 months old.
Sabine Marinschek is a clinical psychologist specializing in early infancy and childhood as well as eating disorders and tube feeding. She works for the NoTube LLC, which was founded to help children all over the world to overcome the severe condition of tube dependency. The ultimate goal of the multidisciplinary team is to teach the child how to eat and to finally remove the feeding tube. Furthermore, NoTube helps children with all kinds of early feeding/eating behavior disorders. NoTube offers telemedical coaching as well as onsite treatment options. The program („Graz model of tube weaning“) has been developed at the University Children’s Clinic Graz by Prof. Marguerite Dunitz-Scheer and Peter Scheer during the last 30 years. NoTube evaluates its work on a scientific level, numerous publications provide a success rate of over 92%.
Links mentioned in our show:
(Corience: An Independent European platform on congenital heart defects: For patients, parents, doctors and scientists)
www.notube.com (NoTube) To write to someone at NoTube, use this email: firstname.lastname@example.org