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.
I was six when Josh was born and had been a very healthy child, minus a few cuts and scrapes. I’d never broken a bone or even been in the hospital. So when Josh was rushed into surgery after surgery, it was very new territory for my parents. Because of his extensive medical needs, Joshua was transferred from our local hospital in the spring of 1995 to the care of Nedda Hobbs, MD and her team at Boston Children’s Complex Care Services, who would eventually save my brother’s life.
I distinctly remember walking into Boston Children’s for the first time. There was a giant structure in the center of the lobby brought in by the Museum of Science. In my mind, I still see the structure’s levers and pulleys as they carried bright colored balls to and fro. It would become a metaphor for the next few years of my childhood. Our family would be guided throughout various wings of Boston Children’s, maneuvered by people who were working hard to bring us to the main goal: discharge. The light at the end of the tunnel.
Josh underwent multiple surgeries over the year. He had an operation to remove an extra toe, two tongue reductions, a tracheostomy and a feeding tube placement, just to name a few. He spent most of his days in a hospital bed, my parents and I by his side.
Needless to say, my 1st grade classmates didn’t see much of me. Instead of learning addition and subtraction, I mastered the art of maneuvering a maze of long, winding halls to reach the hospital’s food court. When it came to getting from point A (Josh’s room) to point B (the pudding), I had no equal. I raced wheelchairs down the hallways with my inpatient friends. I played in the play areas, painted with Boston Children’s Child Life specialists and knew first hand what it felt like to hear that my brother might not live to see tomorrow.
When we were finally allowed to take Josh home, we had nurses living in our home for day shifts and night shifts, tending to him and all his medical equipment. (His “nursery” looked more like a space ship than baby’s room.) But after three very long years of treatments, surgeries and helpful smiles by amazing staff, like Dee in Radiology—who still has a drawing hanging by her desk I drew more than 18 years ago—Josh, my mom, dad and I made it through.
Josh recently turned 19 and is in his first year of college at Plymouth State University, my alma mater. He’s studying sports management, living on campus and adjusting to college life despite his Crohn’s disease. Long gone are the days of worrying about tumors or the medical reactions from BWS, but life with Crohn’s is no easy battle. Despite it all, Josh is a happy guy who loves spending time outside with our dad, talking with my mom or playing games with me and the rest of our family. He struggles sometimes, like we all do, but his bright attitude after so many near-death experiences is inspiring.
Because of him, I feel like I can do anything.
That kind of inspiration doesn’t happen often, and I have Boston Children’s to thank for it. Thanks to everyone who made my childhood special and kept Josh in this world to become the inspiration he is, not just to my family but others as well. Thanks to Dee who always surprised us with giant balloons, or Nedda who could make us laugh despite the surroundings. Thanks to all the doctors, nurses and specialists who looked the other way when I rammed into a door with a wheelchair or took too much chocolate pudding. Thanks to Boston Children’s I didn’t have a typical childhood; I had a great one.