Avery Harris was born full term, with a normal pregnancy. Everything seemed normal at first, except that Avery couldn’t seem to keep any food in for long. After 8 days of being home, he was brought to the pediatrician 3 times because we felt something was not right, and the soft spot on his head kept sinking (which it did). One morning Avery stopped eating. He was rushed to the hospital and so began a very scary journey leading to a diagnosis of Microvillus Inclusion Disease.
Microvillus Inclusion Disease is a condition characterized by chronic, watery, life-threatening diarrhea typically beginning in the first hours to days of life. Rarely, the diarrhea starts around age 3 or 4 months. Food intake increases the frequency of diarrhea. Microvillus inclusion disease prevents the absorption of nutrients from food during digestion, resulting in malnutrition and dehydration. Affected infants often have difficulty gaining weight and growing at the expected rate (failure to thrive), developmental delay, liver and kidney problems, and thinning of the bones (osteoporosis). Some affected individuals develop cholestasis, which is a reduced ability to produce and release a digestive fluid called bile. Cholestasis leads to irreversible liver disease (cirrhosis). In individuals with microvillus inclusion disease, lifelong nutritional support is needed and given through intravenous feedings (parenteral nutrition). Even with nutritional supplementation, most children with microvillus inclusion disease do not survive beyond childhood. A variant of microvillus inclusion disease with milder diarrhea often does not require full-time parenteral nutrition. Individuals with the variant type frequently live past childhood. I am thrilled to say Avery has the variant form of the disease.
After spending much time in the NICU at Morristown General a decision to transfer him to CHOP (Children’s Hospital of Philedelphia) was made. Most people with this disease are IV nutrition dependent, including Avery.
Fast forward….Avery will be almost 2 years old the day of the ride. He is now TPN dependent for the most part but continues to be a happy toddler who lives life to the fullest and inspires us daily. He has spent much less time in the hospital and as of this writing enjoyed Christmas with his family and friends. He has begun to eat to help his speech skills and his motor skills, verbal ability and height and weight are beginning to catch up.