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Tube-Wean Program

During the period of rapid growth in infancy, Single Ventricle patients often experience feeding difficulties due to the increased workload we place on the single functional pumping chamber and inefficiencies in the flow of blood through the heart. The high caloric demand on your baby may not be met by oral feeding alonetherefore your baby could require supportive nutrition through a supplemental tube called a nasogastric tube (NG) or gastric tube (GT). We work closely with parents in collaboration with our physical therapists, occupational therapists, speech feeding therapists, and dieticians to help babies do as much oral feeding as possible. Unfortunately, some children struggle to make meaningful progress with oral feeding until after the interstage period is over and their physiology is a little more stable. Our Interstage Home Monitoring team is committed to helping all patients achieve all oral feeds by their first birthday (at the latest) and has developed a nationally recognized program that utilizes our existing Tele-Health Interstage Home Monitoring Program to support a structured tube weaning program for our interstage graduates. This program requires a significant commitment from parents and providers alike but has been tremendously successful at getting kids tube-free.