Author: Maureen McCarthy

Caroline’s life-changing backpack

Girl getting measured at doctor's office before EEN appoinrtment
Caroline at a recent appointment getting her height and weight checked

When it comes to being active, there is no stopping Caroline Spaulding. Whether speaking on behalf of inflammatory bowel disease (IBD) legislation on Capitol Hill, performing in a ballet recital or lacing up her cleats for a soccer game, Caroline, 13, is a force to be reckoned with.

Her strong sense of determination is what carried her through her Crohn’s disease diagnosis and the 12-week, formula-only treatment plan — exclusive enteral nutrition (EEN) — that followed.

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Inside the NICU: Shining light on the healing power of touch

Baby girl in NICU with mother
Abigail underwent open-heart surgery and received care in Boston Children’s Cardiac Intensive Care Unit

Traveling through Boston Children’s Neonatal Intensive Care Unit (NICU), you feel the warmth of natural light and a soothing sense of calm.

One mom, leaning delicately over her son’s bedside, caresses his forehead and gently whispers a lullaby. Only a few steps away, a father rests in a chair with his tiny son on his chest. Lifesaving technology fills the 24-bed NICU and a reassuring team of specialized physicians, nurses and Child Life Specialists monitor, treat and embrace their delicate patients.

Nearly 15 million babies, about 1 in 10, are born prematurely each year and in many cases, require complex medical and surgical care. Equally critical to preemie and newborn health is the healing power of touch, experts say.

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Parent-to-parent: Tips for Home Parenteral Nutrition families

Toddler using parenteral nutrition smiles while making bird house

Four-year-old Thomas Onorato is a young zoologist at heart. Often seen with binoculars in hand, the adventurous preschooler is particularly drawn to bird watching. He enjoys talking about his feathery friends and studying their beauty and habitat.

Thomas’ love of animals runs so deep that he says he wants to be a veterinarian when he grows up. “Thomas is obsessed with animals. It’s his love,” says his mother, Melissa.

Beyond his quest to care for animals, Thomas has two other important missions — to manage the rare condition, microvillus inclusion disease (MVID) and receive the lifesaving parenteral nutrition (PN) support he needs to grow and thrive.

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Celiac disease: 5 things parents need to know

celiac-disease
Dr. Dascha Weir, associate director, Boston Children’s Celiac Disease Program

It may be difficult for parents to hear that their child has a chronic illness. When the diagnosis is celiac disease (CD), an autoimmune disorder caused by an intolerance to gluten, there is good news. CD is treatable by changes in diet.

How it works: When food enters the stomach, it’s broken down into tiny digestible particles, which then travel through the small intestine. The small intestine is lined with villi — tiny finger-like projections that absorb nutrients from the food passing through.

In celiac disease, gluten, which is a protein found in wheat, barley, rye and oats, damages the intestine and causes the villi to break down, leaving a flattened lining that can no longer absorb nutrients as effectively.

Dr. Dascha C. Weir, associate director of the Celiac Disease Program in the Boston Children’s Hospital’s Division of Gastroenterology, Hepatology and Nutrition, discusses the disease and offers tips to help families recognize and manage the condition.

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