Hope and Peace in the Small Things – Changing the Outcome of Congenital Heart Disease
In a year of such uncertainty and doubt, it has been more important than ever to find meaning in every day life—in small things that give us hope and peace. The outdoors brings fresh air, tranquility, and many signs that life goes on around us no matter our circumstances. We all have a story, and this is ours.
On July 8, 2016, our daughter, Sadie Brett Boyer, was born here in Nashville. It was discovered during pregnancy that Brett would be born with Down syndrome and with Congenital Heart Disease—commonly referred to as CHD.
My husband, Bo, and I faced the same fears that so many do when given the news that your baby will be born with challenges. What we didn’t know was that having Down syndrome would be one of our favorite things about Brett. We consider ourselves lucky to have been chosen for the special role of parenting a child with these unique abilities who can lead a long, fulfilling life. However, CHD is a condition that often requires medical intervention for survival. While we weren’t familiar with CHD, we knew that 97 percent of the time the particular defect in Brett’s heart does well after surgery. There is currently no cure for CHD, so even after surgical intervention, these children will be lifelong cardiology patients.
We took Brett home from the hospital, proud of our daughter, ready for a full and happy life. The plan was to “repair” her heart in the coming months when the time seemed right. But, God had other plans.
After becoming sick in the fall, Brett went on to have her first heart surgery to treat AVSD (Atrioventricular Septal Defect) at four months old. During surgery, doctors discovered that her heart issues were more complicated than initially thought. Brett continued to battle through another open-heart surgery and several setbacks for 100 days before we lost her in February 2017. CHD and the complications that come along with it took Brett from us. That was the day we started the journey we are on today.
While we were adjusting to life after the loss of a child, my sister-in-law, Caroline Bryan, made good on a promise she had made to Brett to buy her a white pony. It was then that Brett’s Barn was created. Surrounded by wildflowers and bees, it’s a safe-haven for animals and a reminder to us of Brett’s life and how much purpose she has given us—a place to celebrate Brett’s life and all she taught us. But outside of this personal and privately owned tribute to Brett’s life, we wanted to use our voice and the platform so graciously shared with Caroline and Luke, to shed light on the battle against CHD and just how common it is for children with and without Down syndrome. The Brett Boyer Foundation was started a few months later with the mission of changing the outcome of CHD for other families and to celebrate the Down syndrome community.
In the past four years, we have raised more than two million dollars to help fund congenital heart disease research. We have supported families in a multitude of ways from assisting with lodging expenses for families with a child in-patient to participating in community events held by similarly focused non-profits. This disease deserves the attention, funding, research, and advancements that can save the lives of children and change the outcome for so many who live with effects of CHD their entire lives.
Research is happening all over the country, and we are proud to be supporting projects from the West Coast to the East Coast. We have already seen progress in treatment that would have given Brett more options. I continue to find hope in the advancements we are making, knowing that this mission is worthwhile and is important to so many people.
One in 100 births carry a CHD diagnosis. Over 40,000 babies with this disease are born in the US each year. The odds are you know someone fighting this battle. I invite you to join us by spreading awareness and supporting research. And, whenever you see a bee, I hope you’ll remember our sweet Brett, our special Queen Bee, as well as all the other CHD warriors and our capable friends in the Down syndrome community who have so much to offer the world.
They say it’s doubtful that a bee knows it actually shouldn’t be able to fly—it simply does. Take in its magic the next time you’re outdoors.
Click here to read what The Brett Boyer Foundation means to Luke Bryan.