Stories about: ventricular septal defect

Sonia’s story: Saving hearts a world away

ALL PHOTOS: COURTESY OF THE GEAMBASU/CONOVARU FAMILY

When Sonia Conovaru was born in Romania in 2007 with a number of complex congenital heart defects, she was given a 10 percent chance of living 12 months. Her mom, Oana Geambasu, a young acting student, didn’t know anything about health care, but knew she wasn’t willing to accept that outcome. It was the start of a journey that would take them thousands of miles and forever change the course of their lives.

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A diagnosis of Down syndrome motivates a family to go the extra mile

Mae, who has Down syndrome, sits on the bottom of a slide. As she leaves nursery school at the end of each day, Mae Tapley blows kisses to every person she passes on her way to the door. For her mother, Susie, watching teachers and staff step out into the hall to wave to her daughter is a welcome change. Three years ago, when Mae was born with Down syndrome, it seemed like no one knew what to say to her.

“When you have a typical child, people tell you how beautiful they are,” says Susie. “With Mae, no one told us she was beautiful or that she would have a full life until we came to Boston Children’s Hospital. They believed in her from the first day.”

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Against all odds: Colin’s biventricular repair

Colin, who had a biventricular repair, climbs onto the table during his office visit.

Catherine and Julio Pita were already seasoned parents when they learned they were expecting their sixth child. But when an ultrasound at Catherine’s 16-week prenatal visit showed their baby had a hole in his heart, they were surprised and unprepared.

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Family Advocacy Day: Three families take their stories to Congress

Nova, who has Pfieffer syndrome, walks through a park.
Nova is taking her story to Congress

Later this June, three patients from Boston Children’s Hospital will be joining other kids and young adults from across the country at the 2018 Speak Now for Kids Family Advocacy Day in Washington, D.C. During their visit, they will share their stories with Congress and ask them to protect all children’s access to health care.

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