Stories about: medically complex children

No stopping him: Liam doesn’t let complex conditions slow him down

liam stays active despite complex conditions

Liam Wise has spent a considerable portion of his 14 years on earth seeing various clinicians at Boston Children’s Hospital. So it wasn’t surprising when, asked by his mother, Sarah, what he wanted to do during a recent vacation, he eagerly replied, “Go to my hospital!” But for this good-natured teenager, Dr. Samuel Nurko and the rest of his care team at the Motility and Functional Gastrointestinal Disorders Center — and in 11 other departments — are like family he looks forward to visiting.

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Remembering my Boston Children’s childhood

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

The Streeters when Josh was an infant

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.

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Lessons in communication–from my Twitter friend

A few weeks ago I sent out a tweet about something that I’d been noticing a lot in clinic that makes me sad. It’s remarkable, I said, how often patients don’t tell their doctors when they don’t understand, or when their instructions are impossible.

A tweet came back: It’s remarkable how often doctors don’t ask if we understand or if their instructions are possible.

The tweeter was the mom of a kid with special health care needs (actually, more than one kid). As we tweeted back and forth about her experiences, it hit me how crucial good communication is when there is medically complex stuff going on. So I asked her if she would help me write a blog post about the things parents like her wished doctors knew—or would ask.

Sure, she said. She talked with some of her friends who also have kids with special health care needs, and this is what they came up with:

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