Stories about: Dr. Bram Raphael

‘An easy decision’: Finding care for short bowel syndrome

care for short bowel syndrome

Allie DeRienzo loves to dance, sing and play with her big brother, switching from the pink-and-purple cartoon world of Shimmer and Shine to the action-packed fantasy of Star Wars with the blink of an eye. It’s a flexibility that has served her well: In just a few years, she’s endured more ups and downs than most 3-year-olds.

Although her pregnancy was normal, it became clear as soon as Allie was born that something wasn’t right. “She was incredibly distended and was transferred almost immediately to a high-level neonatal intensive care unit (NICU) in New York,” remembers her mother, Nanci.

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The tube, the team and the family that give life

Parenteral-Nutrition-Naema-BostonAs 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.

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Parent Q&A: Tips for home parenteral nutrition

lenox 2Thirteen-month-old Lenox Toth has an infectious smile and personality to match.

At 1-day-old, Lenox was diagnosed with midgut volvulus, a condition where the intestines are twisted, or form a kink, and suddenly cut off blood supply.

The tiny tot underwent a round of emergency corrective surgeries at Massachusetts General Hospital and one month later, was transferred to Boston Children’s Hospital for further surgical and nutritional management. He underwent an additional intestinal surgery at 2-months-old, and went home with his parents on home parenteral nutrition (HPN) management at 3-months-old.

HPN provides a home-based method of providing nutrition intravenously through a central line or PICC when a child cannot take food (or, is limited in how much food he can take) by mouth or enterally (through a feeding tube). The nutrients bypass the normal digestive system and enter the child directly through a thin tube inserted into a vein.

Under the care of Boston Children’s HPN team, including Dr. Bram Raphael, director of the Home Parenteral Nutrition Program, and with the unwavering support of his parents, Lenox gets the nutrients he needs in the comfort of his own home.

In recognition of HPN Awareness Week, Lenox’s mother, Frannie, shares some of her family’s experiences and offers helpful hints to manage parenteral nutrition care at home.

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