Stories about: Experience Journal

Experience Journal: A bereaved mother’s lessons from the heart

Jessica with EthanJessica Lindberg’s son Ethan was a brave heart warrior whose journey at Boston Children’s Hospital began before he was even born. At 20 weeks, they learned he had aortic stenosis and evolving hypoplastic left heart syndrome (HLHS). At 22 weeks Ethan was the 30th baby to have an in-utero procedure to open his aortic valve and relieve pressure in the left side of his heart.

By the time Ethan was 2, he’d had four open-heart surgeries. He was also having feeding problems, developmental delays, and was struggling with executive functioning and spatial tasks. Like many other parents of children with congenital heart defects (CHD), Jessica wanted Ethan to thrive as well as survive — to make sure he had the skills to eat, walk, grow and socialize.

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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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Experience Journal: From Venezuela for the chance to live

At five months old, Diana was diagnosed with tetralogy of Fallot with pulmonary atresia, a congenital heart defect (CHD) that couldn’t be treated in her home country of Venezuela. “Being told that your child has no chance of surviving is devastating,” says Diana’s mom, Alejandra. “We were given no hope.”

Research into where in the world Diana would receive the best treatment led her parents to the Heart Center at Boston Children’s Hospital.

Throughout Diana’s journey to health, Alejandra relied on support from her husband, her sisters and the community she found in Boston. “From the beginning, we felt that everyone — from social workers to physicians to staff at the Hale Family Center for Families — worked together so that my daughter could have a chance to live.”

With Diana now through surgery and thriving, Alejandra shares her family’s experience to offer hope and guidance to other families coping with pediatric heart disease.

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 Spanish Voices Journal made possible by support from Milagros para Niños

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Experience Journal: Coping with a child’s congenital heart disease

At 16 months old, Avery was diagnosed with an atrial septal defect — a hole in the wall between the heart’s upper chambers that required open-heart surgery to repair. ​

Shock, fear and pride were just a few of the emotions Avery’s parents Jessica and Andrew experienced throughout their journey coping with their daughter’s congenital heart defect (CHD).

The couple found it helpful to talk through their questions and feelings with other parents of children with a CHD, as well as with Avery’s caregivers from the Heart Center at Boston Children’s Hospital. Now with two years of recovery behind them, Jessica and Andrew generously pay it forward by sharing their experience and offering guidance to other families coping with pediatric heart disease.

Avery's journey with congenital heart disease.

 

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.

Read Full Story | Leave a Comment