Family Resources
Feeding
Many children born with a laryngeal cleft have feeding and swallowing challenges. In type 1 patients, feeding therapy targeting dysphagia for a limited amount of time (on average seven months) may be recommended for stable patients as part of a conservative management approach (IPOG, 2017). In some type 1 patients, this targeted type of feeding therapy may resolve their symptoms. However, many type 1 patients will still need surgical intervention, which is nearly always recommended for types 2 - 4.
After surgical intervention, some children's functional symptoms resolve quickly, while others will need additional help to swallow, accept food/drinks, or wean from a feeding tube. In all cases, feeding therapy should be targeted to the child's individual difficulties and managed by their team of providers (ENT, SLP, pulmonologist, GI, and/or dietician.) If improvements are not occurring or have stopped, the team should create a new plan by carefully considering all aspects of the child's medical, developmental, and nutritional status.
The Dysphagia Outreach Project provides assistance to individuals with dysphagia by providing access to thickeners, pre-modified foods, therapy tools, oral care supplies, and adaptive equipment.
Feeding Matters offers resources to help families navigate all aspects of pediatric feeding disorders - medical (such as a laryngeal cleft), nutritional, feeding skill, and psychosocial. Helpful resources include a family guide, tube feeding information in their resource library, and more.
The Feeding Tube Foundation is leading the fight for the health of all tube-fed children and families by providing unwavering support, education, and resources to end the challenges of feeding tube dependency, one family at a time.
GI Kids provides children and families with resources and easy-to-understand information on the diagnosis and management of pediatric digestive disorders.
Oley Foundation is a resource for those who require tube feeding and/or IV nutrition. Oley has an enteral (tube feeding) donation program for those who have extra formula or supplies and a resource program for those in need of formula and supplies.