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Journal of Human Lactation
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Breastfeeding Practices of Infants with Rubinstein-Taybi Syndrome

Jillian K. Moe, MS, RD

University of Minnesota, Division of Epidemiology, School of Public Health, 1300 South 2nd St., Suite 300, Minneapolis, MN 55454 USA.

Molly D. Holland, MPH, RD

Vermont Department of Health.

Rachel K. Johnson, PhD, MPH, RD

Department of Nutrition and Food Sciences, University of Vermont.

Rubinstein-Taybi Syndrome (RTS) is a rare disorder affecting 1 out of 300,000 people, characterized by broad thumbs and toes, distinctive facial features, hypotonia, and developmental delays. In this study, 180 members of an RTS parent group completed a survey that elucidated breastfeeding practices of infants with RTS. Fifty-nine percent of mothers initiated breastfeeding with an average duration of 7.1 months. Overall, 48% of the women reported that their child had a good to fair suck, and 50% were fairly to very pleased with the breastfeeding experience. Problems reported with breastfeeding included poor weight gain (46%), poor nipple grasp (35%), failure to thrive (34%), and infant fatigue (33%). In other populations of infants with special needs, many breastfeeding problems have been alleviated with instruction, proper positioning, close nutritional follow up, and strong encouragement by the health care team. With adequate support, mothers and their children with RTS can successfully carry out breastfeeding.

Key Words: breastfeeding • Rubinstein-Taybi Syndrome • children with special health needs

Journal of Human Lactation, Vol. 14, No. 4, 311-315 (1998)
DOI: 10.1177/089033449801400415
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