Breast Feeding Practices of Children with Rubinstein-Taybi Syndrome

Abstract

LEARNING OUTCOME: To define four ways dietitians can assist new mothers to successfully breast-feed children with Rubinstein-Taybi Syndrome Rubinstein-Taybi Syndrome (RTS) is a rare disorder affecting 1/ 300,000, characterized by broad thumbs and toes, short stature, distinctive facial features, hypotonia, gastroesophageal reflux (GER), feeding issues and developmental delays. In this study, 180 members of the National RTS Parent Support Group completed a survey which elucidated breast-feeding practices of children with RTS. Surveys were sent to 259 parents with 11 returned undelivered and 180 (70%) returned completed. Seventy-two percent of women reported they planned to breast feed before the birth of their child while 59% actually initiated breast-feeding with an average duration of 7.1 months (±8.97, 2 days−48 months). Those who did not breast-feed most often cited “not for me” and “child's poor suck” as their reasons. Formula and/or pumped breast milk were given to 70% of the children as supplements, most often due to poor weight gain and mother's schedule. Other problems reported with breast-feeding included low weight gain (46%), poor nipple grasp (35%), failure to thrive (34%), fatigue (33%), and GER (28%). Overall, 48% of the women reported their child had a good to fair suck and 50% were fairly to very pleased with the breast-feeding experience. The women reported they were given helpful information and support by family, friends, nurses, physicians and the La Leche League. They received little helpful information an/or support from dietitians. Helpful information included booklets, positioning techniques, and nutritional monitoring by the physician. Many of the problems experienced by mothers breast-feeding children with RTS could be alleviated with breast-feeding instruction, proper positioning, close nutritional follow up and strong encouragement by medical personnel. In conclusion, with adequate support and information, breast-feeding can be successfully carried out by many mothers and their children with RTS and dietitians can play an integral role in this success