Sage’s Journey with CHD

02/11/2026

Lilly’s Heart Journey is the viral myocarditis warrior today, we just recently connected but sage has followed her page for some time now. This is her story.

We thought we had a healthy baby girl named Lillian “Lilly.”

We brought her home, and everything seemed perfect—until she spiked a fever at just 6 days old while at the pediatrician for a routine weight check. We were told it was probably nothing, but to take her to the ER just to be safe.

It was not nothing.

That visit marked the beginning of an almost 7-month hospital stay.

We were flown to Children’s Hospital and admitted straight to the NICU. After a little over 24 hours, Lilly began needing oxygen and her heart rate climbed into the 300s. We were transferred to the CICU, where we met some of the most incredible people, and not long after, Lilly was placed on ECMO (life support).

At that point, we still had no answers. Then she tested positive for enterovirus.

Lilly wasn’t improving and could not tolerate coming off ECMO. Our only option was to place an LVAD and list her for a heart transplant. The surgeon who placed the LVAD told us her heart would never recover—nearly the entire left side was white with scar tissue.

Not long after, Lilly stopped tolerating the LVAD and required a second open-heart surgery to repair leaky valves. We didn’t know if she would survive. The surgeon told us they had never performed this type of surgery on a baby her age or size.

She made it through—but needed her LVAD connected to an ECMO setup while waiting for transplant.

Then, Lilly suffered a massive stroke, affecting the right side of her body. Shortly after, she needed a VP shunt placed for hydrocephalus—an especially terrifying surgery because she was on blood thinners.

That surgery became a turning point.

Lilly started to improve, and not long after, she received her gift of life. She was just 4 months old when she received her heart transplant. She did incredibly well, and when Lilly was 7 months old, we finally went home.

Because of her extremely complicated hospital stay, Lilly didn’t get the chance to play or reach milestones the way the LVAD was meant to allow.

Now, Lilly is almost 3 years old and will be 3 years post-transplant in September. Overall, she is doing absolutely amazing. The stroke has complicated things and still affects her, but she is starting to use the right side of her body more and more. She has come so far, and we are beyond proud of her.

Lilly has beaten so many odds. She is truly a miracle.

We still see many specialists and make frequent trips to Children’s Hospital. We recently had another admission due to a seizure, and Lilly may need another brain surgery to help control them. Doctors believe the seizures are related to her stroke.

This journey is far from over—but Lilly continues to fight, just like she always has. 🤍

02/10/2026

Claytons story is different then the others i have shared so far he didnt end up with a heart transplant his heart healed something that doesn’t usually happen.

Sometime after birth and going home, Clayton contracted rhino enterovirus we only found out that he was sick by going to his well child visit and he did a completely 180! He was sepsis, lethargic, would no longer latch, but was fine the morning of said well child visit. That’s when our journey began with his heart condition, we got transferred from Parkview Hospital here in Fort Wayne to Cincinnati children’s hospital where they put him on a bunch of different medicines and listed him for heart transplant. A month after being listed we got the call for a heart, but a few hours later I got another call that they learned more information about the donor and decided to not take the heart at all, because it would give Clayton more issues later on down the road and he was doing well enough that they believed we could wait a little longer! Gradually they took him down on medications and then eventually off those medications, by the middle of December he was doing so well they wanted to take him off of his heart medication and see how he would do. He was taken completely off the heart medication within two days and then discharged from the hospital! Since December 31st we have been home and following up with his cardiologist in Cincinnati and Clayton has been doing amazing! He was taken off the transplant list in June 2025 and has since been taken off of two of his medications and soon will be taken off of another medication and will only be on two medications after that which include his BP medication and beta blocker!
Cortney Batchelor

02/09/2026

Brooks, a courageous young boy fighting viral myocarditis, is today's featured warrior, and I am grateful to have recently connected with his mother, Vanessa Blue. Brooks is a precious child, and I am honored to help share his inspiring story. Although born with a healthy heart, Brooks developed myocarditis due to enterovirus, commonly known as the common cold, before leaving the hospital as a newborn. He suffered a 75-minute cardiac arrest, spent three weeks on ECMO, experienced a stroke and pulmonary hemorrhage, and required seven months on a Berlin heart, followed by a heart transplant and rejection. After nine months in the hospital, Brooks returned home for the first time and is now thriving at two years old, thanks to our donor. Vanessa Blue

02/08/2026

Today’s viral myocarditis warrior is Frankie I also have the honor of calling her mom my friend Caitlin Mary it’s so amazing the relationships you build in this community. This is her story:

For our family, viral myocarditis went from an unfamiliar term to a life-changing reality on October 26, 2023, when our daughter Francesca “Frankie” Charlene suddenly became critically ill at just six days old.

Frankie was born on October 20, 2023 — a strong, healthy 9 lb 3 oz baby girl. She came home eating well, thriving, and soaking in love from all of us, especially her big sister, Vinnie. But in less than a week after birth, everything changed on day 6th of life. She became unusually sleepy, stopped nursing, and vomited. By morning of day 7, her tiny body was mottled, her temperature dangerously low, and her heart rate unstable. Our pediatrician took one look and immediately sent her by ambulance to the children’s hospital.

In the ER, a swarm of doctors and nurses fought to stabilize her. Her blood had turned acidic from lack of oxygen — a sign her organs were beginning to shut down. After hours of intervention, cardiology determined her crisis was heart-related and rushed her to the Cardiac ICU. That night, Frankie’s heart stopped twice. She miraculously revived on her own both times, but her heart was failing fast.

The next morning, surgeons placed pacing wires in hopes of supporting her weak heart. Complications followed, including a blood clot in her leg that threatened the loss of her foot. Soon after, she was officially diagnosed with viral myocarditis caused by Rhino/Enterovirus, leading to secondary dilated cardiomyopathy because her heart was so enlarged.

For weeks, we hung onto every tiny sign of improvement. At one point, her heart began beating in sync on its own — a small but powerful moment of hope. But when the team attempted to remove her breathing tube, her heart simply couldn’t keep up. She needed more help.

On November 22, 2023, the day before Thanksgiving, Frankie underwent her second open-heart surgery in a month to receive a Berlin Heart, a mechanical pump that would keep her alive while she waited for a transplant.

Frankie spent the next six months in the hospital, growing and fighting every single day. Despite the tubes and machines, she learned to roll over, babble, smile, and even eat again. Each milestone felt like its own miracle.

Then, on May 20, 2024, the call we had prayed for finally came, a donor heart was available. In the midst of unimaginable loss, another family said “yes” to organ donation, giving Frankie her second chance at life. That day, she received her precious Hero Heart.

Her journey since has included biopsies, catheterizations, and setbacks, but also strength, joy, and resilience that amaze us daily. Frankie is here. She is thriving. Transplant saved Frankie’s life, but it isn’t a cure. We’ve traded one illness for another, stepping into a lifetime of medications, procedures, and fighting to protect her new heart. She is a living reminder of the power of modern medicine, early recognition, and the selfless gift of organ donation.

This Heart Month, we honor:
❤️ The families fighting viral myocarditis
❤️ The children waiting for donor hearts
❤️ The donor families who make miracles possible
❤️ Every clinician who fought for our girl

And we share our story for one reason:
Awareness saves lives.
The more people who know the signs, the more hearts we protect.

02/07/2026

So thankful for all the relationships we have made on our journey ♥️🫶🏻 Robert’s CDH Journey Sawyer the Warrior

It has been feeding tube awareness week and I am greatful for the tribe this journey has brought to me even though we are all miles apart. Sawyer the Warrior and Sage’s Journey with CHD

02/07/2026

While playing with his brothers, Sage slipped and struck his face against the side of the couch, but fortunately, he is okay and only needs some rest and love.

NOTE:it’s been cleaned off and looks much better now

02/07/2026

♥️Today’s viral myocarditis warrior is one of my absolute best friends Sawyer the Warrior this is his story♥️

Sawyer was born a little early and with one kidney so he was placed in the nicu for observation but was doing great and was supposed to go home in two weeks. Unfortunately on day six he spiked a fever and his heart rate went into the mid 300’s and he was emergently rushed to the nearest children’s hospital where his parents were told that if his heart rate did not come down within about 3 days, he would not make it.

On the third day, after every failed intervention, his heart rate miraculously came down. At that point they were able to run tests and he tested positive for enterovirus - which normally presents as a common cold. But for Sawyer, it caused so much damage to his heart (and multiple strokes) that one doctor said that in his 20 years of pediatric cardiology he had never seen a heart so damaged.

His diagnosis was viral myocarditis caused by enterovirus. Only one hospital was willing to accept sawyer at that point to see if he would be able to live until a heart transplant was available.

Sawyer received his hero heart at almost 9 months old and finally went home at almost 10 months old.

He is about to celebrate 3 years post heart transplant and is the happiest little boy in the world. He is non speaking, level 3 autistic, has kidney disease, is 85% visually impaired, and is g tube dependent. He is the sweetest warrior in the world and his parents and big brother work really hard to honor his donor by raising awareness for organ eye and tissue donation every day. Organ donation saves lives.

Sawyer is a heart warriors through and through help spread awareness to viral myocarditis our other heart warrior’s.

Viral Myocarditis

02/06/2026

❤️ Not Every Heart Warrior is Born With a Defect.
When we think of Heart Month, we usually think of CHD. But there is a group of Heart Warriors whose battle didn't start in the womb—it started with a common virus.
⚠️ The Reality of Viral Myocarditis
For these children, "heart disease" wasn't a diagnosis they had at birth. They were healthy, active kids until a routine virus—like the flu, a stomach bug, or a cold—attacked their heart muscle instead of their lungs or throat.
This is Viral Myocarditis, and it changes everything in an instant.
🛑 From a Simple Cold to a Heart Transplant
Viral myocarditis is the "great mimicker." It starts with fatigue and shortness of breath, but it can progress with terrifying speed.
• It causes the heart muscle to become so inflamed that it can no longer pump.
• It is a leading cause of sudden heart failure in previously healthy children.
• For many of these warriors, the damage is so severe that a Heart Transplant becomes their only hope for survival.
💓 Awareness Saves Lives
This February, we are wearing red for the kids in the CICU who didn't see this coming. We are honoring the transplant recipients who are living proof of a hero’s gift, and we are supporting the families navigating a "new normal" they never expected.

Im going to share the stories and pages of three amazing kids over the coming days
Sawyer the Warrior
Caitlin Mary
Vanessa Blue

02/06/2026

Pictured Left to Right: Ayla (Ayla’s Journey with HLHS), Sage (Sage’s Journey with CHD), Waylon(Ways Legacy)and Sawyer (Sawyer the Warrior).

Us moms have been connected by our kids and have become best friends even though we are miles away from each other. Love you guys ❤️

What is so important about today? Today we wear red to honour all the heart warriors, angels and family. We bring awareness to the journey these kiddos and families have faced and the fight they’ve all fought.

The heart community is like a family, it’s one we never wanted to/imagined we’d be apart of, however, it’s probably one of the best families there is.

❤️CHD is one of the most common birth defects
💙1 out of every 100 infants are impacted
❤️25% of heart defects require a surgery or procedure within their first year of life
💙more than 90% of children with CHD live into adulthood
❤️CHD kills more children every year than any other defect or illness combined.
💙There is no cure for CHD.

02/06/2026