How The Brett Boyer Foundation is helping families one heartbeat at a time.

Words by Mary Alayne B. Long
Photos by Ford Fairchild

Several years ago I made a one-day fly in, fly out trip to Nashville so I could visit several friends who were attending the Dear Mom Conference for mothers of children with special needs such as Down syndrome. I am fortunate to know many ladies in that community, and I could write for days about the way they all circle the wagons to love and support everyone in their special tribe.

However, this article isn’t about them. It’s about a new friend I made that day and one who’s become more dear to me with each passing year. I don’t believe it was an accident that Ellen Boyer just happened to be sitting at a table right between Jack’s Basket and Ruby’s Rainbow that day. Had she been in some other part of the building, I doubt our paths ever would have crossed. Lordamercy, I sure am grateful they did because she is one of the most delightful and generous souls I have ever had the pleasure to know.

A few weeks ago, I repeated my fly in, fly out trip to Nashville. Only this time I spent the day with Ellen and her sister-in-law Caroline Bryan. They filled me in on all the great things the foundation has been working on and their many achievements in the last five years. I was also glad to visit the new Brett Boyer Foundation (BBF) office and thoroughly enjoyed my firsthand tour of Brett’s Barn. I am glad for the chance to share their story with you here now, and I’ll go ahead and warn you to get your Kleenex ready. Go ahead and get your checkbook ready too. Trust me when I tell you, you’re going to want to support the amazing work they are doing to help children with CHD and their families. 

Back in 2016, my sweet friend Ellen and her husband Bo were expecting their precious daughter Sadie Brett. At their 22-week appointment, they discovered Brett had an AVSD (congenital heart defect) that was most commonly associated with Down syndrome. They prepared themselves to face the diagnosis, and while they were concerned, it didn’t lessen the love they felt for their little girl.   

Ellen said, “It never crossed my mind she wouldn’t survive. Ninety-seven percent of children born with a heart defect survive. It never occurred to me we would be in the 3 percent. I am grateful God blessed me with the ignorance to survive it at the time.” Brett’s surgeon, Dr. Mettler, who’s now at Johns Hopkins, did everything within his power to save Brett.  “He was so good to our family. He cried with us when he told us we were out of options. We asked what we needed to save her life, and he told us she needed a valve replacement and that there were none small enough.” 

Even though CHD is the most common birth defect; the bulk of funding for heart research and the development of artificial valves is focused on adult patients. Adults are the ones who develop heart disease, and sadly, the ones from whom companies can profit. They believe that their adult research will eventually trickle down to pediatric patients, but so far, that hasn’t happened. Plus, the valve needed for a baby isn’t the same as one needed for a grandmother. 

Once Brett’s family learned the facts about heart research, they were furious. It lit a fire under them all, and they collectively agreed to find a way to raise the money themselves. Ellen and Caroline set out to find ways of funding coronary heart disease (CHD) research and to support families going down the same road they already traveled. Even though their efforts didn’t come soon enough to save sweet Brett, they are on the warpath now and won’t be stopped. It’s lovely to know that her name will forever be attached to the marvelous advances being made surrounding the treatment of CHD—and it’s all being done in her memory. 

Ellen told me, “Pediatric valves need to grow with each child—adult valves don’t. I know some children with even the simplest valve defects who have had five open heart surgeries.” That’s why their latest funding is so important. “The most recent project we are over the moon about is the partial heart transplant. This allows the valves to grow with them, and they are potentially needing no further interventions, which is truly a miracle. And with some children who need full transplants, maybe their heart doesn’t pump properly or they have cardiomyopathy or some other problem that leaves them with otherwise healthy valves, once they receive their full heart transplant surgery the healthy valves can still be used for other children who need them. It’s opened up an entire new database of donors because it’s a domino. One of the things I had never considered, because Brett didn’t have a transplant, is how hard it is psychologically on the family that receives a heart. They have survival guilt and PTSD from everything they’ve been through. And they’re emotionally tied to the heart their child is born with. In this case, it’s been a really healing part of it that their child’s heart is not trashed; parts of it are going on to save another child. We weren’t even anticipating that. It’s definitely a feel-good thing. I would have been thrilled to know that Brett could have been a donor.” To date they’ve funded 15 partial transplants: nine at Duke, three at Texas Children’s, two at Columbia New York, and one in Charleston. 

The Foundation initially started funding the kinds of things that could have saved Brett. Now it has evolved to help heart families who are fighting multiple issues. All of the research projects are designed to make a way for children to live longer lives and improve their quality of life. They’ve fully funded a psychologist for the heart families at Vanderbilt and one at Duke as well. Ellen and Bo were lucky to have a therapist through their church after Brett passed, and Ellen said, “He really was treating us for trauma. General trauma. And it was helpful and I’m glad we did it. But we feel like people need an inpatient provider to establish a rapport with—someone who says, ‘I’m your person. I’m here. I know what you’re going through.’ Someone who’s trained on what these parents have seen.” 

BBF often hosts events, and each year they have a special Mother’s Day Luncheon for ladies  they’ve served. One year they asked the mothers in attendance how many of them had talked to anyone about what they’d been through. All of them said they had seen a therapist of some sort, and all of them said they quit going because it wasn’t helpful. When Ellen encouraged them to look for someone who might be a better fit, they all agreed that therapy was expensive and that what they’d been through was too hard to talk about. Two of the mothers even confided that the therapists they worked with told them that the details of their children’s deaths weren’t important.  Can you even imagine? “The details are everything,” Ellen said. “The scars are a lot deeper than the ones you see on their chests.”

As you can imagine, learning this only provided more fuel for the fire, and as a result of that conversation, BBF later partnered with the Ollie Hinkle Heart Foundation (OHHF). Their entire mission is providing mental health resources to heart families, including parents, grandparents, and siblings—who are often forgotten. They work to pair people who will work well together and offer therapists from every religion, race, gender, and background available for the families they serve. They make sure the families they help feel comfortable with the therapists with whom they are matched. They also provide assistance for health care providers. I learned there’s a super high suicide rate for pediatric surgeons, and OHHF doesn’t forget about them and the psychological care they need. The work they are doing is incredibly important, and it’s too big of a problem to solve alone. BBF has funded their mission in Tennessee and Georgia and has plans to make sure they are eventually available to everyone in the country. Ellen shared, “The more support we provide inpatient, the bigger the need is outpatient. Once they see how helpful it is, they know they need it consistently, and it’s so expensive.” Even though I felt like I knew the answer, I asked her if most health insurance plans cover mental health care. “No,” she said. “And they don’t reimburse for it either. The hospital loses money on it.”

Ellen also works closely with cardiac social workers to find out what sorts of comfort items are needed by the families in all of the hospitals they serve—and that’s no small feat. The essential help they provide is very different in each institution, and Ellen connects with the local support groups to find out what’s already being done so there’s no overlap. Then she fills in the gaps. BBF provides help with toiletries, meals, blankets, gas cards, and financial assistance. They are currently linked with Monroe Carell Jr. Children’s Hospital at Vanderbilt in Nashville,  Children’s Healthcare of Atlanta, The Medical University of South Carolina at Charleston, Duke University, Cincinnati Children’s Hospital Medical Center, Texas Children’s, Arkansas Children’s, Cleveland Clinic, Boston Children’s Hospital, Lurie Children’s Hospital of Chicago, Children’s Hospital of Philadelphia, and Johns Hopkins University. And the families they serve appreciate learning that they’ve already made this journey. Ellen said, “Part of the story that makes this mean more to families is that we know that these things are needed because we’ve lived it. All of us saw it. Caroline and Luke were at the hospital all the time too. Caroline was there every day. You think, ‘Oh my gosh, I’m the only person going through this.’ Then you look out into the hallway and you see there’s 38 beds full. You’re not the only one. It’s really common. One in a hundred babies are born with CHD. Don’t think it can’t affect your family.”

Another important mission of BBF is Brett’s Barn. It’s a very special place and was started all because of a joke Caroline made while she was swooning over Baby Brett. “I was at Ellen and Bo’s house holding her, joking around, and I said, ‘I’m going to buy you a little white pony.’ When Brett passed, a month went by, and I watched Ellen and Bo suffer, and there was nothing I could do. In the past we’ve had tragedies in our family when I’ve been so busy with children that that’s all you can focus on, and I just couldn’t do anything to help Ellen and Bo. Then my sweet friend who works at an animal rescue place called and told me they’d just rescued a white miniature pony, and I didn’t think twice about taking it. We also got another pony and a goat from her. Then we added a pig. Now we have over 30 animals at the barn, and when we watch kids come out after being in the hospital for days on end—and whether it’s heart issues or Down syndrome or cancer or whatever—to see the looks on the children’s faces and watch the parents have a place to simply sit and relax and breathe—it’s wonderful.” Ellen added, “At Brett’s service we had wildflowers. When the barn was built, it was surrounded by wildflowers and bumble bees. It felt like she was there.”

The barn now boasts ponies, goats, pigs, llamas, dogs, cats, chickens, and then some. Their collection continues to grow, and while some animals came from happy homes, most of them have been through difficult circumstances. Some of them were even starved and mistreated. Many were nursed back to health from the brink of death. That one little joke about a white pony has grown into a therapeutic place like no other, and The Barn provides a refuge for the families who visit every bit as much as the animals who live there. 

So, all that is to say, my sweet friend Ellen has been quite busy in the years since we first met. She’s a force for good in this world, and she’s unstoppable. Since Brett’s passing, she and Bo have welcomed a son, Wells, and another daughter, Lottie. They often visit the barn and are both growing up to know and love the sister they never got to meet. And they’re lucky indeed to have a mother like Ellen who is working to make this world a better place for them and for children everywhere. There are brighter days ahead in the CHD community, and she’s a huge reason why. 

As we brought our visit to a close and I started to put away my notebook, Ellen made sure to point out that there’s a big circle of folks working together to support the mission of BBF. She doesn’t want all of the credit. Caroline chimed in and said, “It’s a big circle of lots of help and support, but Ellen is in the front holding the torch, ready to go to battle at any moment.” 

Just before I left, I asked Ellen why she’s so determined. She told me, “If we don’t do it, who will? And why not us? It’s what we were born for.”

To learn more about The Brett Boyer Foundation and Brett’s Barn, please visit thebrettboyerfoundation.org. You can make a donation there too—and I sincerely hope you will.