Author: Ellen Greenlaw

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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A happy return: Catching up with Eva

The Ramirez family pose in Boston.It’s about 2,400 miles from Salt Lake City to Boston. But it’s a distance Jennifer and Vincent Ramirez are more than happy to travel to get care for their daughter Eva. The family first traveled to Boston Children’s Hospital in January of 2016 for surgery to remove Eva’s encephalocele — a surgery her doctors in Utah had said wasn’t possible.

This spring, the family was back in Boston for a follow-up visit with the surgeons who performed her surgery, Dr. Mark Proctor, neurosurgeon-in-chief, and Dr. John Meara, plastic-surgeon-in-chief.

For this visit, Jennifer and Vincent had decided to bring along their two older children, Violet, 7, and Vincent, 5, and make a family vacation of the trip, catching a Red Sox game and spending a slightly chilly day at the beach.

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Living with Rett syndrome, living with hope

Ava, age 7, has Rett syndrome.For the first year of her life, Ava Gryniewicz seemed to be developing like any other happy baby. She had learned a few words, including “mama” and “dada,” and was picking up Cheerios with pincer fingers.

But by the time she was 14 months old, everything had changed. Ava started to lose these skills and wasn’t reaching other milestones. At the recommendation of her daycare center, she started early intervention.

“She wasn’t keeping up and her daycare providers were concerned that standard daycare might be too much for her,” says her mom, Joanne. That’s when Joanne and her husband Jack decided to have Ava evaluated.

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Is your teen depressed? Seven tips for parents

Your daughter comes home from school, slams down her books and retreats to her room with a scowl. Since starting high school, you’ve noticed she’s been moody and irritable and her grades are starting to suffer. Should you be worried about depression?

“Almost everyone goes through periods of feeling sad or irritable for usually brief periods of time,” says Dr. Oscar Bukstein, associate psychiatrist-in-chief and vice chairman of psychiatry at Boston Children’s Hospital. “What sets depression apart is the presence of distress or impairment that interferes with daily life.”

Bukstein says he’s seen a steady rise in depression in young people over the past 25 years, as the stress of daily life increases. “The good news is that treatment generally works and more kids are seeking treatment.”

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