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.

A referral to Dr. Janice Ware in the Cardiac Neurodevelopment Program helped make that possible. “About a year after our initial visit, I pulled out the 10-page report Dr. Ware had written for us after our first appointment with her,” Jessica writes. “To my surprise, Ethan had accomplished about 80 percent of the goals she had set. What had felt daunting and overwhelming were now accomplishments.”

Ethan died in June of 2012 at age 7. Jessica remains grateful for the chance to help him thrive.

To other parents of a child with a (CHD), Jessica offers these words of advice: “Our children with CHD are a gift. They are here to teach us and give us a perspective on life and living we’d never have without them… Commit to taking it one day at a time, one year at a time. Rest when you must. Relish in the gifts of each day and in the little victories. Seek out the support you need as a parent. At the end of the day it’s about doing your best, not about reaching the goal. Above all, love and accept your child just as they are and give yourself a pat on the back for being the most amazing and resilient parent.”

Jessica and Ethan

Read Jessica’s full story.

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 story is part of the Bereavement Journal and Heart Experience Journal, created by the Department of Psychiatry and the Heart Center. Follow Jessica on Instagram @jmlindberg.