Stories about: ventricular septal defect

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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Samuel’s heart: After four years and four surgeries, it’s the healthiest it’s ever been

Samuel, who had a biventricular repair on his heart, wears his heart hero costume.

When Samuel Guinn was born, his parents, Jennifer and Grant, expected at least one surprise. The couple from Jennings, Louisiana had chosen not to learn their third baby’s gender ahead of delivery. But soon after their beautiful boy’s birth, they got an unexpected surprise — he had a serious heart condition.

“Within an hour, the doctors noticed a heart murmur and transferred him to a larger hospital in Louisiana,” says Jennifer. “Once he was there, they diagnosed him with transposition of the great arteries (TGA) and a ventricular septal defect (VSD), but they couldn’t keep him stable, so they told us they wanted to send him to a bigger hospital in New Orleans.”

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Experience Journal: ‘Heart defects won’t keep me from reaching my goals’

Emily Ryan was born with coarctation of the aorta and a ventricular septal defect (VSD). But these congenital heart defects have never kept her down. Even though she’s had a pacemaker since age 4, she’s always led an extremely active lifestyle.

Emily’s parents and her team of caregivers from the Heart Center at Boston Children’s Hospital have helped Emily understand her heart condition and have given her the confidence and encouragement to realize her full potential — both in the classroom and on the track.

Now a competitive Division 1 athlete and outdoor leader in college, Emily wants everyone to understand, “Just because you have a congenital heart defect, doesn’t mean you can’t be active or do whatever you want to do.”

The Experience Journals are collections of stories, videos and personal experiences from families about what it has been like to live with their children’s illnesses. This video is part of the Heart Experience Journal, created by the Department of Psychiatry and the Heart Center.

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