Stories about: child life

One mom’s insights: Navigating care for children with behavior differences

autism complex care

Diba Jalalzadeh, now 12, paces energetically around the waiting room. She has been coming to Boston Children’s Hospital since she was a baby. Today she is seeing her developmental medicine specialist, Dr. Carolyn Bridgemohan.

But she’s just one of the many specialists Diba sees at Children’s.“We touch on many departments,” says Monir, Diba’s mother.

Diba was diagnosed with Crouzon syndrome when she was 10 months old. She has had several surgeries to manage the effects of her craniofacial syndrome on her skull, eye muscles, tonsils and adenoids. She currently wears a brace on her chest to counter kyphosis (her shoulders’ tendency to cave in).

Though she’s never gotten really sick, Diba is a complex patient. Unrelated to her syndrome, she also meets criteria for autism spectrum disorder, so procedures most kids will put up with can potentially make her very anxious.

Blood pressure measurement? “She doesn’t enjoy that at all, but she tries to get through it.”

Sleep study? “She had a very hard time sleeping through the night but she managed to sleep a little,” says Monir. “If you ask her to do it again, she says, ‘No I can’t even try it!'”

Eye patching for an exam? “I won’t do it.” (She finally agreed to it at the end of the visit.)

Even measuring Diba’s head circumference can be a challenge.

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The art of healing: Spinal fusion patient Dylan Morang fights through pain for his art

dylan-morang-art-exhibit-1

The purpose of art is washing the dust of daily life off our souls. – Pablo Picasso

Ever since he was a young boy growing up in Rockland, Maine, Dylan Morang has been artistically inclined. His mother remembers him often sitting at his little desk, happily consumed by his coloring. When he wasn’t drawing, he was gathering inspiration along the beautiful rocky shores and through the deep woods of Maine.

Dylan is now 24, and his love of art has only grown. He studied art in college, taught himself Photoshop, and is currently exhibiting his artwork at Boston Children’s Hospital, where he underwent two surgeries for severe scoliosis and osteogenesis imperfecta, a hereditary disease that causes weak bones.

Hordes of visitors stop to admire the rich watercolor paintings and vibrant graphic designs inspired by the artist’s home: a great horned owl, a fern frond, a Chesapeake Bay blue crab. About his work, Dylan says, “I’ve just always loved art and experimenting with different color combinations.”

raccoon Owlbert

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Happy Halloween!

To celebrate here’s a quick video of our patients from last Halloween, showing all the trick-or-treating that happened on our floors. At Boston Children’s we believe that a stay in the hospital shouldn’t mean that a child has to miss out on all the things that make being a kid great. Our Child Life Specialists always go above and beyond to normalize hospital life as much as possible, and this video is a great example.

And if your little ones will be out trick-or-treating tonight, please follow these safety rules!

• Walk in groups with a trusted adult. Never let children trick-or-treat alone.

• Use a flashlight to help them see (and help others, especially drivers, see them).

• Always walk. Children should never run from house to house.

• Wear well-fitted masks, costumes and shoes to avoid blocked vision or trips and falls.

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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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