At just 6 months old, Jack Marquis was suddenly given four weeks to live. After he was born with complex congenital heart defects, Jack’s doctors in California had performed two open-heart surgeries that they thought would save Jack’s life.
But just when they thought he was out of the woods, Jack’s condition suddenly began to deteriorate rapidly.
“On top of everything else, we learned he had a rare condition called pulmonary vein stenosis,” says Jack’s father, Andrew. …
“In my experience, patients do better when they are well prepared for surgery,” says Dr. Michael Glotzbecker, a pediatric spine specialist and surgeon at Boston Children’s Hospital, who performs dozens of spinal fusion surgeries each year to treat children with scoliosis.
That’s why Glotzbecker teamed up with Brianna O’Connell, a child life specialist and program lead of simulation programs for patients and caregivers at the Boston Children’s SIMPeds Simulator Program, to create an immersive day for patients and their families to experience spinal fusion well ahead of surgery day. …
Anna Protsiou was five in 2002 when she was diagnosed with neuroblastoma. She remembers pain and the fruit-scented anesthesia masks that led her to stop eating cherries. She remembers hospital arts and crafts projects. What she barely remembers is the pediatric oncologist who saved her life.
She was a young girl then who didn’t speak English, moving with her family from their native Greece to be treated for a year at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. Now, after moving with her family to Canada in 2014, she’s a 20-year-old dance student at the School of Contemporary Dancers/ University of Winnipeg and a contortionist with a rubber-band body. She’s ready to claim her history as her own, ready to move beyond photographs of the doctor and memories recounted by her parents, ready to take charge of her own health care.
Some say it takes a village to raise a child. When it comes to inflammatory bowel disease (IBD), our patients and their families depend on a “village” of caregivers — gastroenterologists, nurses, dietitians, social workers and more — to carry them through their journey.