When a baby is born with, or develops, a serious medical condition it doesn’t just affect the child—his or her whole family is affected. In the following blog, Jenn Streeter describes her experience “growing up” at Boston Children’s Hospital, as the healthy sister of a young boy being treated for multiple conditions.
By Jenn Streeter
There are certain childhood memories that stick with a person throughout life—a trip to Disney World, waking up Christmas morning and finding a new bike under the tree or the butterflies you get in your stomach on the first day of school. These memories are part of my childhood too, but I also have memories of growing up that most children could never relate to. As a child, I knew all too well knew the smell of an ICU unit, encountered talking elevator muttering strange words like “Fegan 10” and can clearly recall opening birthday presents bought in a hospital gift shop. And though it may sound odd, those are among my most cherished childhood memories.
My brother Joshua was born on October 4, 1994, to my wonderful, excited parents Edward and Sherri Streeter. While it was a joyous occasion, his birth also marked the start of a long medical journey. He arrived a few weeks premature with omphalocele (intestines grown outside the body), spinal meningitis and a disease I could barely pronounce—Beckwith Wiedemann Syndrome—more commonly known around my house as BWS. BWS often causes an overgrowth of organs and limbs and carries an increased risk of tumors and diseases. …