Lillian's Story


Trisomy 18, also known as Edwards syndrome, is a condition caused by an error in cell division, occurring in about 1 out of every 2500 pregnancies. The developmental issues caused by Trisomy 18 are associated with medical complications that are generally critical in the early years of a child’s life. Only 50% of babies who are carried to term are born alive.  Intensive care admissions in Neonatal Intensive Care Units (NICU’s) are the norm for infants with Trisomy 18. Infants that survive and are discharged from the hospital require extensive care and support by the parents, family, and outside help. The greatest challenges for these children are generally in those body systems with the greatest developmental delays or deficiencies. In some children it may be the respiratory system and in most the digestive system is compromised.

Although there is very little supporting literature regarding the importance of complete nourishment, families and care providers have shared their own accounts and observations with us. When it comes to providing support for those children with Trisomy 18, the diet has to be both complete and completely compatible with their digestive system. That immediately eliminates 99% of enteral formulas and for at home preparation, would require a very knowledgeable meal preparer that could effectively combine foods for nutrient availability and for blend-ability. These cases cannot be about simply providing enough calories and protein on paper. They have to be about finding foods that both fit and nourish.

Any foods that pose a challenge to the average digestive tract are almost insurmountable for those with Tri18. Dairy, soy, wheat, eggs, and shellfish are off the table, with nuts and some fruits also in serious question. These children are best supported with as much breast-feeding as possible and an eventual transition onto vegetables and proteins presenting the least difficulty for effective digestion. For some children that may mean stewed or poached meat, never blackened, grilled, browned, or fried, that is then completely pureed. Other children may require more plant-based sources of protein such as garbanzo beans, pumpkin seed protein, and/or brown rice protein. Extra virgin olive oil, coconut oil, and flax oil make the most sense with respect to fats.  Signs of difficulty in digestion or nutrient availability range from vomiting and reflux issues to constipation, increased respiratory issues, and iron deficiency, often reflected in a child’s overall level of contentment.  

Delayed development in particular areas of the digestive tract and/or the child’s pancreas can exacerbate those food intolerances already common among healthy, non-Tri18 kids. As is the case with so many conditions, wouldn’t we want the optimal foods or formula for those with the greatest challenges?

~ John Bagnulo MPH, PhD.