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Breastfeeding practices of infants with Rubinstein-Taybi syndrome
J K Moe1, M D Holland, R K Johnson
1Division of Epidemiology, School of Public Health, University of Minnesota, Minneapolis 55454, USA.
Insights
Breastfeeding Rubinstein-Taybi Syndrome (RTS) infants is feasible, with over half of mothers initiating. Challenges like poor infant suck and fatigue were reported, but support can improve outcomes.
Area of Science:
- Medical Genetics
- Pediatrics
- Human Lactation
Background:
- Rubinstein-Taybi Syndrome (RTS) is a rare genetic disorder impacting physical and cognitive development.
- Infants with RTS often present with hypotonia and feeding difficulties, raising concerns about successful breastfeeding.
- Understanding breastfeeding experiences in RTS is crucial for developing targeted support strategies.
Purpose of the Study:
- To investigate breastfeeding practices and challenges among infants with Rubinstein-Taybi Syndrome.
- To identify common difficulties encountered by mothers and infants during breastfeeding.
- To explore the potential for successful breastfeeding with appropriate interventions.
Main Methods:
- A survey was administered to 180 mothers of infants with RTS within a parent support group.
- The survey collected data on breastfeeding initiation, duration, infant feeding ability, maternal satisfaction, and reported problems.
- Descriptive statistics were used to analyze the collected data.
Main Results:
- 59% of mothers initiated breastfeeding, with an average duration of 7.1 months.
- 48% reported a good to fair infant suck, and 50% were satisfied with the breastfeeding experience.
- Common issues included poor weight gain (46%), poor nipple grasp (35%), failure to thrive (34%), and infant fatigue (33%).
Conclusions:
- Breastfeeding is initiated by a majority of mothers of infants with RTS, despite reported challenges.
- Specific difficulties such as poor suck, weight gain, and fatigue are prevalent.
- With adequate support, including instruction and healthcare team encouragement, successful breastfeeding is achievable for RTS infants and their mothers.
Abstract:
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.