Put your heart in to your CHD adventure
Natalie Bushaw is the mom to nearly 17-year-old twin boys Owen and Logan, who were born with complex health issues with a host of congenital defects, including a multifaceted heart defect. Natalie and her family are from Eagan, Minnesota. While no one prepared them to be parents of congenital heart defect children, she feels equally the same way about the preparedness and the teenage years. She serves on the Parent Advisory Board at the University of Minnesota Masonic Children’s Hospital, and volunteers with the American Heart Association, Logan Loves, and CaringBridge. Natalie is also lucky enough to have a career that helps to positively change lives as senior director of corporate communication at Life Time.
I have the joy—and challenge—of being the mom to nearly 17-year-old twin boys Owen and Logan. After pleading with God to allow our boys to make it into this world in 2003, I became a passionate ambassador for helping other families and improving patient and family-centered care. While no one prepared us for the normal chaos that comes with the teenage years, I’ve learned a thing or two about dealing with complex health kids given both of our boys were born with a host of congenital defects, including a multifaceted heart defect for our son Logan. I’m so proud to work with other parents as chairperson of the Parent Advisory Board at the University of Minnesota Masonic Children’s Hospital, to serve on the annual FashionFest committee to benefit the hospital, to grow Logan Loves, a 501 (c) 3 non-profit dedicated to bring joy and healing to kids and families in the hospital, and the opportunities to occasionally volunteer for CaringBridge and the American Heart Association. I’m also lucky enough to have a career that helps to positively change lives as senior director of corporate communication at Life Time.
February is about love. Celebrating Love. Giving love. Sharing love. And the universal symbol of love? The heart.
Hearts have become very important in our family, dating back to March 2003 when my husband and I learned we were having identical twin boys, due at the end of July. Then, at a level two ultrasound in April (April Fool’s Day, no less) we learned our twins were one of the rarest types of identical twins with an 85% mortality rate before birth and that something appeared wrong with one of their hearts. At that appointment, our doctor suggested selective reduction in order to give the other twin a higher chance of survival. This wasn’t an option for us on any of the three occasions it was raised and we proceeded with a fetal echocardiogram shortly thereafter. It was there that we learned Baby A would be born with a severe congenital heart defect—a single right ventricle—with a host of other anomalies that went along with it. The doctor felt he had a “w” on a scale of a to z but a “workable w.” Baby B also would be born with issues but none heart-specific. Our boys, Logan (Baby A) and Owen (Baby B) were born June 23, 2003 after I spent seven weeks in the hospital for constant monitoring to ensure their safe arrival into this world.
Fast forward to today and we’re nearly 17 years into our adventure with our twins and our emotional hearts have been full of love and gratitude every day, even though not every day has been easy. The boys are juniors in high school and are happy, God-loving, zest-filled kids, as they have been since day one. For us, our life is our definition of normal. For others, it’s not. Between both boys, they had about 35 surgeries and procedures by the time they were five. For Logan, he and his “half-a-heart” went through two open heart surgeries (Glenn and Fontan) at 4 months and 3 years respectfully, he dealt with recurring SVT’s, a cardiac ablation and a myriad of other heart and lung issues before receiving a life-saving heart transplant at age 13 in 2016. What a gift! The adventure didn’t stop after his transplant, and he dealt with massive rejection six weeks post-transplant and another bout of rejection from Dec. 2018 to May 2019 that “consumed his heart” to the point we were looking at an LVAD as a bridge to another transplant. Miraculously, his heart function recovered but his coronary arteries suffered severe damage and as a result he was listed for another transplant just after Thanksgiving 2019.
Throughout this adventure, we’ve always stayed realistically optimistic and frankly, have not thought of ourselves as a “heart family.” It doesn’t define us day-to-day with anything but finding joy in the journey and I think that’s been a part of why we’ve been called to be one of the thousands of “heart families” around us — to help others on their own adventures and to share love and hope and inspiration. As heart families, most of us would agree we’re called to face things that others may think to be unfathomable but day-by-day, year-after-year, decade-after-decade, we face, we embrace and we endure. For us, learning about the challenges they’d face before our babies were born allowed us prepare for—and be okay with—a life of unknowns. Four words that have changed our lives are “Accept. Adapt. Move on.” I encourage other families to work toward this mindset because it can be a game-changer in how they handle all that’s ahead. We’re blown away by the advancements the AHA has made since 2003. Our son Logan is here because of those advances in surgeries, treating rejection and so much more. And we have all the confidence in the world that this will only continue as we watch our son grow. For families who have a child with a congenital heart defect, I can’t say the adventure will be easy but I can say that living with a heart of love and gratitude will most surely make it your own kind of wonderful.
Logan got his new (2nd) heart on Dec. 22nd and is doing “better than expected” according to his doctors. A Christmas Miracle, Natalie says!