Heartbreak to Hope
Alumni form The Brett Boyer Foundation, Brett’s Barn to shed light on congenital heart defects
There’s a place just outside of Nashville, Tennessee, where the sun shines a little brighter and its rays are a little warmer. There is a palpable sense of love and cheer in the air. An afternoon there can turn even the toughest days around, especially for the Boyer and Bryan families.
It’s also a place more than two dozen rescue animals — including llamas, goats, horses and more — call home. A barn decorated with painted bumblebees stands among fields of wildflowers. It is a place of solitude for the families as they remember and honor the late Brett Boyer, daughter of alumnus Bo Boyer, Ellen Boyer, and niece of alumni Caroline Boyer Bryan and country star Luke Bryan.
“Brett’s Barn is the happiest place of love and peace,” said Caroline. “Every minute we spend there makes everything better.”
Today, the families work together to raise awareness of congenital heart defects (CHD) and celebrate people with Down syndrome through Brett’s Barn and The Brett Boyer Foundation, an organization they began after losing Brett to complications from CHD.
“Brett was the biggest and best unexpected blessing of our life,” said Ellen, who attended Georgia Southern prior to finishing her sonography degree in Atlanta. “Bo and I tried for her for seven years so she was a miracle right off the bat. We found out she would probably have Down syndrome very early during my pregnancy, and learned that she had a heart defect when I was 22 weeks pregnant.”
CHDs are the most common type of birth defect, affecting one in 100 babies, according to the Centers for Disease Control and Prevention. CHDs are present at birth and can affect the structure of a baby’s heart and the way it works, including how blood flows through the heart and out to the rest of the body.
“I was so uneducated about both CHD and Down syndrome,” Ellen added. “I thought her heart could be fixed but was so scared of what Down syndrome would mean for our family dynamic. I was afraid of the wrong diagnosis. As soon as I laid eyes on her I knew Down syndrome didn’t need to be cured. She needed to be celebrated for exactly who she was.”
At four months old, Brett needed open-heart surgery.
“We were told her particular heart defect, Atrioventricular Septal Defect, had a 97% survival rate with surgical repair,” Ellen said. “We were blindsided to be in the 3%. After 100 days of fighting for more options in a pediatric cardiac ICU that was full of families just like ours, we lost Brett to complications from congenital heart disease.”
Though the Boyer and Bryan families were experiencing intense grief, they knew immediately they wanted to turn their grief into something positive and create a legacy for their daughter.
“We decided to start the Brett Boyer Foundation about a week after losing Brett,” Bo said. “We needed a way to channel our grief and to ensure that Brett would not be forgotten. One of the harshest realities when losing a loved one is the world doesn’t stop turning. The sun will come up the next day and people will carry on with their lives. Even though Ellen and I were going through the worst time of our lives, people had responsibilities to their own families. Growing the Foundation has been our way of cementing Brett’s legacy in this world even though she is not here. Every event we have, more people leave knowing her story and will tell others about Brett’s brave fight and what her Foundation is doing to help other families in the same fight.”
The Brett Boyer Foundation’s mission is to spread awareness and fund congenital heart disease research while supporting the CHD community.
“Knowing that every 15 minutes another mother is hearing that their child has a heart defect and that we have the opportunity to help them is what keeps us going,” Ellen said.
The Foundation works to fund research projects around the country that advance the treatment of CHD and offer financial support to families impacted by the disease by raising money and awareness.
“We just funded the first full-time psychologist for the pediatric cardiology department at Vanderbilt Children’s Hospital to service the patients and families receiving a CHD diagnosis and hope it becomes the standard of care,” Ellen said.
In addition, the Foundation is currently supporting studies on heart valves, a microbiome project on gut health in intensive care settings, a biosensor study on monitoring systems, and outcomes of patient and family support at various children’s hospitals around the country. Four new studies are set to take off in 2022 with support from the Foundation, Ellen added.
The Brett Boyer Foundation is also dedicated to the inclusion, opportunities and celebration of Down syndrome.
“It’s so important to us for people to know that we didn’t lose Brett to Down syndrome, we lost her to congenital heart disease,” Ellen said. “That’s why we want to fund research to improve outcomes with a CHD diagnosis and to celebrate the Down syndrome community. Down syndrome doesn’t need to be cured. It is pure joy.”
The Foundation raises funds with the sale of merchandise online and at Luke’s 32 Bridge restaurant in Nashville, along with various fundraisers such as Bike for Brett (in Cyclebars around the country and online), The Redbird Games in Franklin, Tennessee, and most recently the inaugural Brett Boyer Invitational featuring Putting for Purses in Savannah, Georgia.
“We were so proud to have support from Georgia Southern as our presenting sponsor,” Ellen added.
The Foundation established its own Medical Advisory Board, which accepts grant proposals, determines appropriate funding and monitors the outcome of these investments. Both Ellen and Bo’s families are involved with the Foundation and Ellen and Caroline serve on its Board of Directors.
“Having the support of so many people that share common goals is the main reason the Foundation has been able to grow as it has,” Bo said. “Our loved ones traveled with us down Brett’s path and were there for us at all times. We realize not every family is lucky enough to have this type of support system so that is why one of the goals of the Foundation has been to somehow reciprocate this feeling of support to other families. Also, having the opportunity to meet and work with some of the more gifted minds in the country on ideas of what the Foundation can do to help families that are currently in the battle has been extremely humbling.”
Caroline felt called to honor Brett’s memory as she watched her brother and sister-in-law grieve the loss of their newest family member. Soon, she found an opportunity to complement the Foundation and fulfill a promise to get Brett a white pony.
“Our family has experienced more than our fair share of tragedy, but with the other losses, Luke and I have been able to jump in and help with supporting and lifting up our family,” Caroline said. “But when Bo and Ellen lost Brett, I felt like there was nothing I could do. I wanted to help so badly. A friend of ours who works at a rescue farm in west Tennessee called me shortly after and said, ‘You won’t believe this but we just rescued a white pony…do you want her?’
“I knew this was something I could do to honor Brett.”
After Caroline adopted the white pony, Kilo, and a few other animals, she and the family knew they had something special.
“When the first couple of animals got here, we felt the happiness it brought all of us to be around them,” Caroline said. “To know we saved them, and to feel Brett’s presence at the barn, I knew we wanted to share this happiness and Brett’s light with the world.”
Brett’s Barn is not currently open to the public, but the families work with local hospitals and Down syndrome advocacy groups to share the love and joy they experience at the Barn.
“To date, we’ve had several groups from Gigi’s Playhouse (a Down syndrome achievement center), the Down Syndrome Association of Middle Tennessee, St. Jude and other families with CHD that we have personal relationships with through Vanderbilt Children’s Hospital. Our goal is to one day have the barn in a public place, where our rehabbed animals can safely love on people and offer support like they do for our family every day.”
Through their work with the Brett Boyer Foundation and Brett’s Barn, the Boyer and Bryan families have found healing.
“There is such a great purpose and perspective in our lives from the Foundation and Brett’s Barn,” Caroline said. “It has given us more ways to use our platform for good and that is so fulfilling. It’s also a healthy place to pour our love through our grief.”
— Crissie Elrick Bath