Feeding and nutrition can be complicated for parents to navigate for their child with congenital heart disease. Nutrition is important for everyone, but for infants and children with CHD, it is essential, not just for survival, but for helping them thrive.
In recent years, much of the focus on nutrition for CHD patients has shifted from aiding CHD patients to survive to how feeding and nutrition can help them thrive. Whether your child feeds all by mouth or requires a feeding tube, eats breastmilk or formula, nutrition and feeding can be challenging to navigate, something that takes the whole care team, including parents.
We recently discussed feeding and nutrition considerations for patients with CHD with experts Megan Horsley, a pediatric dietitian at Cincinnati Children’s Hospital Medical Center and a member of the Nutrition Advisory Council for Prolacta, Dr. Julie Lavoie, the director of Enteral Feeding Program & Cardiac Quality & Outcomes at Children’s Wisconsin, and Jenn Fridgen, a physical therapist working with feeding and development in single-ventricle patients at Seattle Children’s.
How Hunger Helped Dawson Learn to Eat
After having two open-heart surgeries, Dawson Henson needed a feeding tube to meet his nutrition needs. His mother desperately wanted him to eat by mouth but didn’t know how to wean him off the tube. That’s when Physical Therapist Jenn Fridgen and Dietitian Lauren Boyer stepped in to help…
Read Dawson’s Story
Resources from Conquering CHD:
Guided Questions Tool: https://www.conqueringchd.org/guided-questions-tool/
Guided Questions Tool – Spanish: https://www.conqueringchd.org/cuestionario-de-preguntas-guiadas/
The Care Partnership Pyramid: https://www.conqueringchd.org/patient-engagement-tool-care-partnership-pyramid/
CHD Wise: Breastfeeding & CHD: https://www.conqueringchd.org/breastfeeding/
Resources from our experts:
A Parent’s Guide to Tube Feeding: https://www.conqueringchd.org/wp-content/uploads/2021/12/NPCQIC_ParentBulletin_FeedingTube_20210205-1.pdf
Heart Institue Intensive Feeding Tube Wean Program: https://www.conqueringchd.org/wp-content/uploads/2021/12/419412_HI-Tube-Weaning-Flyer_FINAL_English_150-dpi.pdf
Article: Weaning from a feeding tube in children with congenital heart disease: A review of the literature https://www.sciencedirect.com/science/article/abs/pii/S1058981321000801
Article: Improving growth of infants with congenital heart disease using a consensus-based nutritional pathway https://www.clinicalnutritionjournal.com/article/S0261-5614(19)33124-3/fulltext
Article: Feeding the child with congenital heart disease: a narrative review https://pm.amegroups.com/article/view/5972/html
Article: Reining in Nasogastric Tubes: Implementation of a Pediatric Bridle Program https://www.pediatricnursing.org/article/S0882-5963(21)00067-1/fulltext
Article: Actual and Potential Impact of a Home Nasogastric Tube Feeding Program for Infants Whose Neonatal Intensive Care Unit Discharge Is Affected by Delayed Oral Feedings https://pubmed.ncbi.nlm.nih.gov/33789159/
Article: Nutrition of neonates with congenital heart disease: existing evidence, conflicts and concerns https://www.tandfonline.com/doi/abs/10.1080/14767058.2018.1548602?journalCode=ijmf20
Questions to ask your child’s heart center – Children’s Wisconsin: https://childrenswi.org/Medical%20Care/herma-heart/Questions%20to%20ask
Resources from Prolacta:
Clinical Trial Announcement: https://www.prolacta.com/en/prolacta-feed/clinical-trial-evaluating-ehmd-single-ventricle-physiology/
Clinical Trial: Exclusive Human Milk Feeding in Infants With Single Ventricle Physiology https://clinicaltrials.gov/ct2/show/NCT02860702?term=Cynthia+Blanco&cntry=US
About our partnership with Prolacta Bioscience:
This episode of CHDWise has been made possible through our partnership with Prolacta Bioscience. Read how we’re working together to connect families to research: https://www.conqueringchd.org/building-relationships-connecting-families-research/.
– Together, we collaborate to connect patients and families to important research
– We’ve worked together for several years (pre-pandemic) educating patients and families about the importance of human breastmilk
– They are currently in clinical trials researching an exclusive human milk diet for infants with single ventricle physiology
– The Prolacta Bioscience foundation helped us fund our COVID-related research program – our InformCHD database
– They’ve been consistent supporters of our annual legislative advocacy conference in Washington D.C. and advocacy efforts throughout the year
We’d like to say a special thank you to Prolacta for your continued support of our education and research programming.