Jessica 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. …
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.”
When people ask me what it was like to run the Boston Marathon, I don’t just think about the race itself. I think about about my entire life journey and all the people who helped get me to Boylston Street. Yes, the actual marathon day is one day in time that people can point to on a calendar, but it’s the long journey with all its ups and downs and the people you meet along the way, that makes it all worth it.
My journey has come full circle, as I went from my mom and I waiting for my dad at the finish line 19 years ago, to them waiting for me as I finished a marathon of my own. …
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.