The Brett Boyer Foundation

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The Brett Boyer Foundation

The Brett Boyer Foundation was created in loving memory and in honor of our beloved daughter Brett. We are truly grateful to be a part of .
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Brett is our first child who was diagnosed prenatally with Down syndrome and a congenital heart defect (CHD). Brett battled this heart disease (atrioventricular septal defect ) for her 7 inspiring and incredible months of life. When we received Brett's diagnosis, Bo and I were uneducated on DS and CHD and were very fearful. The more research we did, the more we realized, the world is in the dark a

bout the underfunding of research to improve the lives of those living with both DS and CHD. As soon as Brett was born we knew that DS was nothing to be feared and was quite possibly one of our favorite things about her. We were so fortunate to live in a great area with a very strong Down Syndrome community. We hope that if you receive a diagnosis, that you will find the same near you, or start one of your own! Down Syndrome is certainly something we believe should be celebrated! There was nothing down about Brett, that is for certain. We only wish we could go back in time to the day of our diagnosis and know what we know now about DS. Instead of tears there would be a high five and a hug saying, “we have hit the lottery!”

Brett’s heart disease diagnosis was a bit different, its hard to find a positive light on hearing your baby will have to have open heart surgery to survive. Fortunately for most, an AVSD (atrioventricular septal defect) is repairable 97% of the time. Unfortunately, we were in the 3%. But our strong baby girl fought hard, and so did the incredible team at Vanderbilt who loved her dearly. That is why this mission is and will always be near and dear to our hearts. What we witnessed in our 100 day stay in the hospital were doctors, nurses, nurse practitioners, respiratory therapist, social workers, transplant teams, sonographers, phlebotomist, and many more fighting to give our girl more options. We believe in these people and their mission. We believe they can revolutionize the world of cardiac surgery, and plan to help them fulfill their God given talents to our utmost ability. At the end of the day, Brett filled our lives with more love than we ever knew possible. Her life deserves to be celebrated and we are so thankful God chose us to be her parents. We could not be more proud of her. We see her everywhere, in everything that we do. We feel called to share the light she left shining in our hearts.

06/10/2026

Elsie Dawn West’s fight with the CHD journey began before we even knew anything was wrong. She was diagnosed with Hypoplastic Left Heart Syndrome (HLHS), Aortic Stenosis, Mitral Stenosis, and Aortic Coarctation, but for the first week of her life, she showed no signs that anything was wrong. To us, she was our perfect baby girl. Then, at just 8 days old, everything changed.

By the time we realized something was seriously wrong and rushed her to the hospital, Elsie was already in shock from her PDA valve closing, something babies with HLHS often do not survive. When we arrived, the medical team immediately began fighting for her life. They wrapped her tiny body in layers of warmed blankets and towels trying to bring her temperature back up. She was so sick that she didn’t cry during countless needle sticks as they desperately searched for a vein to use. (They finally found one that would work in her little head.) An Xray revealed that her heart did not look normal and that fluid had already built up around her lungs. She was so incredibly fragile, did NOT look okay, and every person in that emergency room (plus the hospitals flight team and nurses from the labor and delivery floor) was doing everything they could to keep our baby alive.

My husband stayed by her side while she was intubated for the first time, being strong for our little girl while I completely fell apart. The hospital knew this was beyond what they could handle, and Elsie needed specialized cardiac care immediately. Weather conditions prevented helicopters from flying in to get to her, and for a while it felt like every door was closing. I remember being on my knees crying out to God harder than I ever had in my life, screaming, begging Him to save my baby.

By the grace of God, a specialized team from Children's Healthcare of Atlanta was already making their way to get Elsie by ambulance. We truly believe God placed the exact right people in the exact right places at the exact right time to save her life. The team at Union General Hospital in Blairsville, GA kept her alive long enough to get her transferred to receive the intensive care and support she would need, and we will forever be grateful for every single person who fought for our daughter that night. We are also deeply thankful for prostaglandin medication that bought precious time, for the surgeons and doctors gifted with the knowledge to care for her heart, and for every person who has prayed, supported, encouraged, and stood beside our family.

Elsie stayed at CHOA (both in the CICU & CACU) for 34 days. She underwent her Norwood procedure on March 2, 2026. Since then, she has continued to fight with a strength that amazes us every day. She had a heart catheterization procedure on May 4, 2026, and we are currently awaiting results that will determine the next steps in her journey. Her next openheart surgery is tentatively planned for June 30, 2026, with more procedures expected in the future. We are prayerfully hopeful that one day she may be a candidate for the biventricular route. We don’t know where this road will take us, or when, but we believe God will be guiding each moment.

Our daughter is truly a miracle. There were moments where medically, she should not have survived, but God has had other plans for Elsie. Her story has already shown us what faith, hope, prayer, and perseverance can look like in the darkest moments. To other heart families walking this road: we see you, we understand the fear and uncertainty, and you are not alone.

We are certainly beyond thankful that The Brett Boyer Foundation exists & fights so hard for our CHD warriors.

06/07/2026

It’s Just a Heart Condition

Just four days after finding out we were having a little boy, we were told the unimaginable.

At 12 weeks pregnant, we learned that our baby had a large cystic hygroma measuring off the charts, possible brain abnormalities, and only about a 10% chance of making it to birth. Our rainbow baby, we were devastated. We were told repeatedly to prepare for the possibility that we would lose him… that his body, or mine, would recognize that something was wrong.

The weeks that followed were filled with fear. Every cramp, every ache, every moment of uncertainty made us wonder if this was the moment our world would change. We lived appointment to appointment, bracing for the worst while desperately hoping for a different outcome.

Then, at our early anatomy scan around 16 weeks, we received news we never expected.

I still remember the ultrasound technician saying, “I’m not sure why they asked me to look for brain abnormalities. His brain looks great.”

Not only did his brain look normal, but the cystic hygroma had completely disappeared.

For the first time in weeks, we felt like we could breathe.

But before we could fully celebrate, another concern emerged. The doctors believed our son had a heart condition and referred us to the specialists at Children’s Healthcare of Atlanta.

We arrived confused, overwhelmed, and unsure of what came next.

The following day, we met with the fetal cardiology team, where they confirmed that our son had Hypoplastic Left Heart Syndrome (HLHS).

Our first question was simple:

“Does this mean he’ll live? Does this mean he’ll make it to birth?”

The cardiologist looked at us and said, “I don’t see why not.”

In that moment, everything changed.

After weeks of being told we might lose our baby, all we heard was that our son was going to live. Live.

In our minds, it was just a heart condition. We’ve been told worse!!

Over the next six months, we learned more about heart anatomy than we ever imagined possible. We spent countless hours with the fetal cardiology team preparing for life with congenital heart disease. We learned about surgeries, hospital stays, risks, statistics, and outcomes.

The months were hard.

The unknown was daunting. It was impossible not to read other families’ stories and wonder how ours would compare. We worried about surgery. We worried about complications. We worried about all the things parents aren’t supposed to have to think about before their child is even born.

Then, on April 16, 2026, we welcomed Benjamin Lee Travis into the world.

Everything changed the moment he arrived.

No longer were we imagining a future or comparing our journey to someone else’s. This was Benjamin’s story, and we were finally living it.

Shortly after birth, Benjamin was intubated for transport and started on prostaglandin to keep a vital fetal heart structure open until surgery. He experienced an apnea episode after the medication was started and stopped breathing on his own. Born at 37 weeks and 4 days, he was still a little guy, and the days leading up to surgery were challenging.

We often heard that he was sicker than they would like going into surgery. Because he remained ventilated, there were concerns about how he would tolerate the operation. Those days were filled with anxiety as we waited and hoped for good news.

At just four days old, Benjamin underwent his first open-heart surgery: the Norwood procedure.

The morning of his surgery is a memory I will never forget.

I woke up early and sat beside his bed. His eyes were wide open, and I spent hours talking to him, holding his hand, and soaking in every moment. I sobbed in the bathroom for about an hour so nervous and anxious. Praying for our little boy. Eventually, the anesthesia team arrived. They gently took his bed and rolled him out of the room. It was an empty room. No beeps. No nurses. Just mom and dad.

And then we waited.

For eight long hours, we sat with an emptiness that only parents of a child in surgery can understand, holding our breath and praying for the call that would tell us he had made it through.

He did.

The next 38 days brought challenges we never could have imagined. Benjamin returned to the cath lab for balloon procedures to improve blood flow. He was reintubated. We faced multiple NEC scares. There were countless blood draws, X-rays, echocardiograms, medications, alarms, and sleepless nights.

Yet through every obstacle, Benjamin kept fighting.

He continued to show us that he was stronger than any diagnosis written in his chart.

After 42 days in the hospital, we finally brought our baby home.

As I write this, Benjamin is seven weeks old and six and a half weeks post-Norwood surgery. He’s curled up in my arms exactly where we dreamed he would be all those months ago.

When I think back to that first devastating appointment at 12 weeks pregnant, it’s hard to believe how far we’ve come. We were told there was only a small chance we would ever meet him. Instead, we’ve watched him overcome obstacle after obstacle. From the disappearance of his cystic hygroma, to making it safely to birth, to recovering from his first open-heart surgery, Benjamin has been defying the odds since the very beginning.

But our story is far from over.

Benjamin is a single-ventricle heart warrior, and we are currently navigating the interstage period between his first and second surgeries. While bringing him home was one of the happiest days of our lives, it also marked the beginning of one of the most critical phases of the single-ventricle journey. Every feeding, every ounce gained, every medication, and every oxygen saturation reading matters. We celebrate the victories while knowing there is still a road ahead.

In August, Benjamin will undergo his second surgery, the Glenn procedure. Just as he has done since before he was born, we know he will face it with courage and determination.

Throughout this journey, we found ourselves saying the same phrase over and over:

“It’s just a heart condition.”

Not because HLHS is easy.

Not because congenital heart disease isn’t serious.

We know firsthand how frightening, complicated, and life-changing it can be.

We said it because Benjamin was never a diagnosis. He was never a statistic. He was our son.

His heart condition is part of his story, but it is not the whole story.

When I look at him today, sleeping peacefully in my arms, I don’t see the odds, the surgeries, or the diagnosis that once felt so overwhelming.

I see a little baby boy who has been proving people wrong since before he was born. From a baby we were told we would likely lose, Benjamin has shown us that statistics do not define a life.

And that’s why, to us, it will always be just a heart condition.

It’s Just a Heart Condition

06/04/2026

Sharing Zuleyka’s story is emotional, but it also shows just how strong she is. She has never given up, no matter what she’s faced.

As a first-time mom, I never imagined going through something like this. I was six months pregnant when I found out my baby had a congenital heart defect. I was terrified. Zuleyka was only four days old when she had her first open-heart surgery: Coarctation, ASD, and mitral valve repair. Seeing her so small, hooked up to so many monitors, was heartbreaking. I remember it like it was yesterday.

For the first 12 months of her life, Zuleyka was on a feeding tube. It was a tough year, but through it all, she was always a happy, loving, and caring baby. At three years old, she developed atrial flutter and had four catheter ablations. We thought she would only need one surgery, but when she was 10, doctors told us she needed another. I felt like my world was falling apart all over again. On August 7, 2023, she had her second open-heart surgery: pulmonary artery repair, Coarctation of the Aorta repair, PAPVR, and arch repair.

As if recovering from open-heart surgery wasn’t enough, shortly after waking up, she developed foot drop in her right leg. The doctors had no explanation. They ran countless tests, but everything appeared normal. I was terrified. Watching her go through this again was unbearable. But with months of physical and occupational therapy, she showed her strength once more.

Today, Zuleyka is back to doing what she loves: boxing. It has given her confidence and helped her embrace who she is. She has a heart full of strength, a spirit that never gives up, and a light that shines so brightly. No matter what challenges come her way, she faces them head-on. She is a fighter, a warrior of joy, love, and resilience. I feel so blessed to have her and to have such an incredible support system. She is deeply loved by so many.

Sharing her journey is about more than just telling her story. It’s about raising awareness. It helps connect families to resources, support groups, and medical care so they don’t feel alone. I remember how lost and isolated I felt, but I’m so grateful for the amazing people I’ve met along the way. Increased awareness leads to more funding for research, better treatments, and improved surgical techniques. Technology is advancing every day, giving kids like Zuleyka a fighting chance.

Her story is one of strength, hope, and resilience. And I couldn’t be prouder.

Zuleyka, 12

Coarctation of Aorta S/P repair neonate

PAPVR and arch repair

Two open heart surgeries

06/03/2026

Diagnosed at my daughter’s 20-week ultrasound was definitely a blow. At first, they thought it was Truncus, but on their second echo, they determined it was TOF. He was born via C-section at 34 weeks and weighed 3 lbs. In the NICU and on CPAP, we grew him to 6 lbs. After a cath lab, they said it was time. After a 14-hour surgery with Dr. Ma, he was able to do his complete unifocalization. We spent 3 weeks in the CVICU and another 3 weeks in the PICU. We were discharged but remained in Menlo Park for another 7 weeks due to his NG tube. After they removed it, we were able to go back home to Maui. Aside from his scars, you would never know how strong of a warrior he is! He is my hero, and we are forever grateful to Dr. Vivian Thomas because, without him, our heart warriors would be angels. To date, he has only had a stent put into his conduit at 1 year old, and he gets echos every 6 months. His conduit is starting to leak, so we know that we will probably be going back up within the next year or so to change his conduit. Other than that, he is the most active, loving, vibrant 4-year-old I know. Thank you for letting us share our Eddie Boy’s story. Love from a TOF family on Maui 🤙

05/29/2026

Jacob is our 6-year-old son, and he has hypoplastic right heart syndrome. In simpler terms, this means he was born missing a large portion of the right side of his heart. We first learned about Jacob’s heart defect during our 23-week anatomy scan. After this initial scan, we were connected with the pediatric cardiology team at Vanderbilt Children’s Hospital to receive a definitive diagnosis, learn more about his condition, and create a plan for his arrival. From the time of his diagnosis until his birth, we met with a pediatric cardiologist every month.We were educated about the three-stage palliative surgery process, the standard treatment for children with a single-ventricle heart defect like Jacob’s. These surgeries are considered palliative because there is no cure—they are simply a workaround to help his heart function as best as possible since it can never be fully repaired. The doctors also prepared us for his prognosis and what to expect for his future. Through this process, we learned that 1 in 100 babies is born with a heart defect, and single-ventricle defects affect approximately 5 out of every 100,000 babies.

Jacob surprised us by arriving early via C-section on March 30, 2018—just over a week before his scheduled delivery—due to low amniotic fluid. He came out crying and looking like a typical newborn, but he was quickly whisked away because babies with a single-ventricle heart defect require immediate intervention. After experiencing a rapid decline in breathing and oxygen levels, Jacob underwent his first heart procedure—an emergency heart catheterization—on his fourth day of life. He recovered well and had his first open-heart surgery, the Norwood procedure, just two days later, on day six.

Jacob’s first hospitalization was filled with complications and setbacks, resulting in a six-week stay before he was finally discharged on May 11, 2018. However, just six weeks later, on June 27, Jacob was unexpectedly readmitted due to an abnormal echocardiogram and decreasing oxygen levels. After another week in the hospital and another heart catheterization, he was able to go home again, this time with his second open-heart surgery already scheduled for the following month.

On July 26, 2018, at just four months old, Jacob underwent his second open-heart surgery, the Glenn procedure. Afterward, he was able to live a relatively normal life—growing, thriving, and developing like any other child—until his body began showing signs that another repair was needed. On May 10, 2022, at four years old, he had his third open-heart surgery, the Fontan procedure. This surgery also came with many complications, leading to a month-long hospital stay.

To date, Jacob has undergone three open-heart surgeries, seven heart catheterizations, and eight additional procedures—some related to his heart condition and others not. Despite everything he has been through, he is now a thriving 6-year-old, enjoying first grade and loving to sing, play baseball, and ride his bike. While he still experiences some rhythm issues that affect his energy levels and stamina, he continues to embrace life with an incredible spirit.

Jacob’s heart will never function normally, and he will require lifelong care. But we encourage him every day, reminding him that we will always be here to support him in whatever dreams he chooses to pursue. He may have only half a heart, but that will never stop him from living a whole and fulfilling life.

Jacob 8 years old
CHD: HRHS

05/28/2026

My oldest daughter happened to be admitted at Arthur Blank the day I had my fetal echo. I was 22 weeks pregnant. I asked my parents to come sit with my oldest while I went to the South Tower to get the echo done. Before I left, I told my parents, “I’ll be right back. I know there’s nothing wrong.”

As soon as they turned on the screen for Violet’s echo, I knew something was wrong. My baby’s heart looked different. It was a long and quiet 45 minutes. After it was done, I was asked to sit in the conference room and wait. Three people came in, and as soon as everyone sat down, I started crying. I said, “I just need a minute to prepare myself for what I’m about to hear.”

When I was finally ready, they started drawing holes on a diagram of a normal heart. They told me Violet had two holes in her heart and would need open-heart surgery around 4 months old: a complete balanced AV canal defect. I was devastated.

I walked back upstairs to my oldest daughter’s hospital room and just cried. For the rest of my pregnancy, I convinced myself everything would be okay.

Violet was born and had no issues. She was discharged from the hospital after 2 days and came home with me. I was so relieved. The 16 weeks of worry were for nothing, or so I thought.

When Violet was 2 weeks old, I brought her to her first cardiology appointment. It was very long and quiet. The cardiologist came in and said, “Your daughter is critically ill. I am calling an ambulance to transport her to Arthur Blank.”

I had no idea what she was in for.

Violet was in severe heart failure, which was found to be caused by dilated cardiomyopathy. I will never forget the doctor saying, “This is my sickest patient,” during sign-off. How could my 2-week-old baby be so sick?

She started to get worse. I watched her body fail her. Her kidneys became very sick from low perfusion. She developed a lung infection that wouldn’t heal. On top of her AV canal defect, she also had a large PDA that didn’t close. Her lungs were being flooded with blood. Even on a ventilator, she was still working hard to breathe.

They couldn’t operate because she would not have made it through surgery with her heart function being so depressed. They told me her prognosis was very poor and that she might not make it.

30 minutes after telling me she may not make it, the doctor called me and said her heart function was normal. They took her into surgery the next morning to fix her pulmonary circulation. Her chest was left open for 4 days to ensure she tolerated the PA bands.

She got so much better immediately after surgery. Her lungs healed, and she no longer needed dialysis. Her PD catheter was removed.

We tried to wean the ventilator and feed her again, but her heart became very unhappy. Her function was severely depressed again and her heart rate was sitting at 212 while she was asleep. She started to decline again. It became apparent that a heart transplant was her only option.

Violet was placed on the Berlin Heart at barely 2 months old to bridge her to transplant. The Berlin Heart has given her life back.

She had three failed extubations and ultimately needed a diaphragm plication for a successful extubation. She is doing so amazing now. She’s growing. She’s thriving in PT and OT. She loves to play and babble. She is so strong and resilient. She loves her two older sisters.

We’ve been inpatient going on 7 months now. She was listed as Status 1A for transplant on February 2nd & we are still waiting on her hero heart.

📸 Suha Dabit Photography

05/27/2026

Ian was born with Down syndrome and a CHD called Tetralogy of Fallot. When he was born, he stayed in the NICU for 6 weeks, then he had a tet spell requiring him to be airlifted to MUSC. From there, he had his first open-heart surgery, bringing lots of new complications after surgery. He had MRSA, required a G-tube, came home on oxygen, he also had endocarditis, and lifelong follow-ups.

On May 19th, one week before his 16th birthday, he had his 2nd open-heart surgery to close a VSD, resection of his right ventricle, and his pulmonary valve replaced again. After 9 long hours in the OR, he is doing fantastic. He is currently still in the hospital, and we are about 4 and a half hours from home.

Ian has always been a fighter. Through all the appointments, stubbornness, and rough times, he has pulled through every time. No matter how many times something happens, it never gets easier. It comes, then it goes until the next thing occurs. Ian pushes through every single thing like it’s his first and last thing. Just so much willpower and showing love to everyone he encounters.

05/26/2026

Another set of CHAMP Boxes was put together for CHD patients at Monroe Carell Jr. Children’s Hospital at Vanderbilt to support their neurodevelopmental needs.🐝💛

05/22/2026

We’re so excited to bring My CHD Sidekick to heart families everywhere! 💛

Check it out at the link in our bio!

05/19/2026

If you’re part of a CHD family, you know how quickly information adds up.

Appointments. Medications. Specialist notes. Symptoms. Emergency information. Insurance cards. Questions you don’t want to forget.

It can feel overwhelming, especially when you feel like you have to be the keeper of all the information all the time.

That’s why we are excited to introduce My CHD Sidekick 💛 A free digital care companion built specifically for CHD patients and caregivers.

Families can:
✔ Track symptoms, medications, and appointments
✔ Keep important documents and care information organized
✔ Access and update everything easily from a mobile device
✔ Share relevant information with providers, teachers, camp counselors, babysitters, grandparents, etc.

Because CHD patients & caregivers are heroes, and every hero deserves a sidekick!

Learn more and get started at https://thebrettboyerfoundation.org/mychdsidekick

Address

4191 Arno Road
Franklin, TN
37064

Website

http://thebrettboyerfoundation.org/donate

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