Author: Guest Blogger

Summer camp fun for kids with pacemakers/ICDs

Caroline_Sawyer_at_Pacemaker_Camp
 

Like many other 7-year-old girls, Caroline Sawyer and her twin sister enjoy watching Barbie movies, coloring and eating ice cream once a week. However, unlike other kids her age, Caroline has scars from several pacemaker surgeries. She got her first pacemaker at 2 days old because of congenital heart block, a form of arrhythmia.

At Boston Children’s Hospital’s annual Pacemaker/ICD (implantable cardioverter defibrillator) Camp, Caroline is just like everyone else.

On a September weekend, more than 50 campers flock to the YMCA-owned Camp Burgess & Hayward in Sandwich, Mass., for three days of kayaking, rock climbing, zip lining and camp songs. They also compare scars from pacemaker/ICD surgeries. Teen campers talk about being “part robot,” going through metal detectors and how their pacemakers are programmed to slow down at 10 p.m., so they can sleep at night. 

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Our patients’ stories: overcoming breast asymmetry

adolescent-breast-center-blog-postHigh school can be hard enough on a girl’s self esteem. But for Kate*, typical rites of passage — like shopping for a prom dress — were impossible.

After trying on dress after dress that didn’t fit, Kate ultimately settled on something in black, with draped fabric to strategically cover her chest. Alterations made the gown wearable, but Kate still worried about whether her date would notice something that had begun to seem increasingly unusual to her about her body.

Kate suffered from severely asymmetrical, or lopsided, breasts. As she moved through puberty, her right breast grew beyond a D cup size, while her left breast never developed more than an A/B cup. It’s a condition that’s common and often overlooked, and extreme cases like Kate’s can cause young girls great distress, research has shown.

By 13, Kate noticed that her breasts looked different from those of her friends and sisters. “I kept hoping the problem would fix itself,” she recalls. “But it kept getting worse.”

Like many teens with breast conditions, Kate didn’t think there was anything that could be done to help her, so she adjusted as best she could. She and her mom, Susan, describe the teen as a reserved, well-liked girl who enjoyed being a part of many school activities and hoped to become a teacher after college. Kate did not let her asymmetry stop her from playing sports, enjoying the beach in the summer and trips to the mall with friends. She managed the problem by stuffing the smaller breast and wearing multiple bras, one that fit each side. “It was always a burden but I did my best to hide it,” she recalls.

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Kristin’s story: From open heart surgery patient to child life specialist

KD graduation with parents

There’s a saying: “Life’s roughest storms prove the strength in our anchors.” I have faced many storms in my life, and my anchors have grounded me with hope and strength.

I was born with complex congenital heart disease. By the time I was 36 hours old, I had been diagnosed with an atrial septal defect (ASD), ventricular septal defect (VSD), double outlet right ventricle, left and right ventricles reversed, dextracardia, mitral valve regurgitation and pulmonary stenosis. For many, this sounds like a long laundry list of defects, but for me and my family it became everyday life.

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Girls fight cancer with glitz and glamour

For 24 young girls, a recent getaway weekend replaced exam rooms with dressing rooms, hospital bracelets with stylish bangles, and MRI images with professional photographs.

Every year, teenagers and young women ages 13-23, who are being treated at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, go on a “Girls Weekend” in Boston. The weekend includes a musical, a makeover, shopping, and more.

H&M

The girls began their weekend with a shopping spree at H&M.

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