The tube, the team and the family that give life

As 2-year-old Naema Alshehhi turns the pages of her favorite book, her eyes glimmer with curiosity. Sitting with her father, Àbdulla and big sister, Dana, in their temporary Boston apartment, the inquisitive toddler points to a number of shapes and is fascinated by the rainbow of color. During this quiet moment, you see the gentle outline of Naema’s central line through her tiny shirt. The lifesaving tube — surgically inserted into her chest — provides the nourishment needed to manage the rare intestinal disorder she was born with, called microvillus inclusion disease (MVID). The condition, which causes severe diarrhea and an inability to absorb nutrients, requires specialized parenteral nutrition (PN) and intravenous hydration support at home. For the Alshehhi family, however, “home” is over 6,600 miles from Boston. Naema was born in April 2015 in Abu Dhabi, the capital of the United Arab Emirates. Soon after her homecoming and weighing a mere 5.5 pounds, she started having difficulty feeding and became noticeably quiet. Within 24 hours her condition took a drastic turn for the worse. “Naema was very lethargic and we noticed her color was turning blue,” Àbdulla recalls. Àbdulla and Mariam, Naema’s mother, rushed their daughter back to their local hospital and Naema was immediately admitted to the Intensive Care Unit. As the days turned to weeks, upset and fear mounted. Naema was losing weight at an al...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Diseases & Conditions Our Patients’ Stories Dr. Alexandra Carey Dr. Bram Raphael Dr. Rima Fawaz home parenteral nutrition micorvillus inclusion disease multivisceral transplant Source Type: news