Jones CE, Desai H, Fogel JL, et al  (2020). Disruptions in the development of feeding for infants with congenital heart disease. Cardiology in the Young, 1-8

This just published manuscript is a valuable resource for therapists supporting feeding/swallowing for infants with CHD.  The authors include in the-trenches pediatric therapists from leading programs across the US. It will inform your practice,  whether you are in the hospital, Early Intervention  or community programs that support these complex infants.

The introduction:

Congenital heart disease (CHD) is the most common birth defect for infants born in the United
States, with approximately 36,000 affected infants born annually. While mortality rates for
children with CHD have significantly declined, there is a growing population of individuals with
CHD living into adulthood prompting the need to optimize long-term development and quality
of life. For infants with CHD, pre- and post-surgery, there is an increased risk of developmental
challenges and feeding difficulties. Feeding challenges carry profound implications for the quality
of life for individuals with CHD and their families as they impact short- and long-term neurodevelopment related to growth and nutrition, sensory regulation, and social-emotional
bonding with parents and other caregivers. Oral feeding challenges in children with CHD
are often the result of medical complications, delayed transition to oral feeding, reduced stamina,
oral feeding refusal, developmental delay, and consequences of the overwhelming intensive
care unit (ICU) environment. This article aims to characterize the disruptions in feeding
development for infants with CHD and describe neurodevelopmental factors that may contribute
to short- and long-term oral feeding difficulties. 

They discuss the impact of: cardiac physiology, necrotizing enterocolitis, gastroesophageal reflux, timing of cardiac surgical interventions, sedation and medication, chylous pleural effusion, respiratory support, neurodevelopment, genetic syndromes, a noxious feeding environment, nerve paralysis/paresis, and dysphagia. They then discuss the consequences of these feeding challenges, including: nutritional interference, breastfeeding difficulty, tube feeding, oral aversion, and finally long-term feeding outcomes.