Ariya James is just 11 months old, yet her journey has already been filled with more challenges than most adults face in a lifetime. Born with Hypoplastic Left Heart Syndrome (HLHS) and severe aortic valve stenosis, Ariya entered the world with a heart that needed more than love to survive — it needed extraordinary medical care, resilience, and courage beyond her tiny frame.
At just six days old, Ariya underwent the Norwood procedure, a complex open-heart surgery during which a Sano stent was placed to ensure proper blood flow. Barely three days later, she had her chest closure, a routine step in the recovery of such a delicate surgery. But Ariya’s tiny body had other plans. The very next day, she developed hypoxemia — dangerously low oxygen levels — and required another open-heart surgery, a Blalock-Taussig-Thomas (BTT) shunt, to improve her circulation.
The complications didn’t stop there. Just days later, a blood clot formed in the shunt, delaying her chest closure for nearly three weeks. For her parents and medical team, each day was a delicate balance between hope and fear, as Ariya’s tiny body struggled to heal. Weeks later, she was finally extubated, signaling a small victory in her long and grueling recovery.
Even after coming off the ventilator, Ariya faced challenges with oxygen support and feeding. Two and a half weeks later, she was free from supplemental oxygen for the first time. However, her struggles with feeding led to the placement of a gastrostomy tube (G-tube) to ensure she received the nutrition her fragile body needed to grow and thrive.
Six months after her first life-saving surgery, Ariya finally returned home, a milestone filled with both relief and cautious optimism. At home, she continued her journey of recovery, but the challenges persisted. In May, she underwent her Glenn procedure — the second of the three planned surgeries for children with HLHS. Post-surgery, Ariya continued to face setbacks, including another catheterization where a balloon was placed to further improve her blood flow.
Through it all, Ariya’s spirit has remained unbroken. Despite every complication, every delay, and every new challenge, this little girl has shown the heart of a warrior. She has endured the pain of repeated surgeries, the discomfort of hospital procedures, and the uncertainty that comes with every medical intervention — yet each day, she continues to thrive.
Her parents describe her as strong and determined, a little girl who reminds everyone around her that courage doesn’t come from size or age. Ariya has fought through oxygen dependence, feeding difficulties, and the mental and emotional toll of long-term hospitalization, showing resilience far beyond her 11 months.
Medical teams, parents, and caregivers have all marveled at her progress. Each milestone, whether it’s taking steps, feeding independently, or simply smiling through the pain, represents a triumph of perseverance and love. Ariya’s journey highlights not only the complexity of congenital heart disease but also the strength of the human spirit when faced with overwhelming odds.
Her story is also a testament to the dedication of her parents, who have navigated months of uncertainty, long hospital stays, and emotional upheaval while advocating tirelessly for her care. Through sleepless nights, stressful procedures, and the anxiety of waiting for each medical update, they have stood steadfast, providing the comfort, love, and encouragement Ariya needs to keep fighting.
Today, Ariya continues to grow stronger each day. She is off oxygen, thriving post-Glenn, and showing the kind of determination and bravery that inspires everyone who meets her. Despite the medical setbacks and challenges that have punctuated her first year of life, Ariya remains a fighter, proving that resilience and hope can carry us through even the darkest times.
Ariya James is more than a patient — she is a symbol of courage, a little heart warrior who teaches the world about strength, perseverance, and the extraordinary will to survive. Her journey reminds us that even the youngest among us can show the greatest bravery, and that love, medical care, and determination can turn the most daunting challenges into milestones of triumph.
Each day with Ariya is a victory, each small step forward a testament to her spirit. And as she continues to grow and thrive, she shows that no matter the setbacks, no matter the obstacles, a fighter like her can shine brightly, illuminating hope for all who know her story.
Teo – A Little Heart Taken Too Soon.450
The 20th of May 2023 was meant to be the happiest day of our lives. Our beautiful Teo arrived, completing our family and filling our hearts with joy. At 21.5 inches and 7.96 pounds, he looked healthy and strong, a perfect little boy we were so proud of. For a moment, it felt like all the fear and worry of the previous months had melted away.
But that happiness had been tempered by months of uncertainty. The fear had begun at our 20-week scan when Teo’s congenital heart defect was first detected. Two days later, we met with a cardiologist who told us there was some regurgitation in his mitral valve. It was mild, they said, and although we were concerned, we felt a sense of relief. Extra scans were scheduled every four weeks to monitor him closely.
Then, at 28 weeks, another sonographer questioned the severity of the condition. He referred us to a specialist hospital, where a team of cardiologists confirmed our worst fears. Time seemed to stop as they said,
“What your baby has is very serious. His heart could stop at any moment.” The words were almost too much to bear.
Teo had mitral valve insufficiency combined with severe aortic stenosis. We were told he would require a procedure immediately after birth, but no one could be certain he would make it to term. Every day felt like a fragile balancing act, as we prayed he would stay strong enough to be born.
Against all odds, he did. We attended extra scans every two weeks, each one a small reassurance as Teo continued to gain weight and his heart condition remained stable. The doctors planned to induce labor on the 22nd of May, but our little warrior decided to arrive early, on the 20th.
From the moment he was born, reality came crashing down. He was rushed to the NICU, and the bubble of joy and relief we had been holding quickly burst. Speaking to the cardiologist later that morning, we were reminded of the severity of his condition and the risks of any procedure in a newborn. A balloon valvuloplasty was planned for the following day.
The 21st of May is a day we fight to forget. The phone calls, the faces of the doctors, the waiting, the sounds of the NICU—all are burned into our memory. The fear and the news we received that day are indescribable. The procedure went catastrophically wrong. There was a perforation, and Teo needed emergency open-heart surgery to repair it. But his little heart could not cope. He died during the surgery.
A year has passed, yet the grief remains raw. We are learning, painfully, to navigate a life without him. Our daughter misses her little brother terribly, and some days the pain feels unbearable, almost torturous. Support has been there, but so has isolation, because few can truly understand the depth of our loss.
Finding Tiny Tickers became a lifeline. Reading the stories of other families who had endured similar heartbreak showed us that we were not alone. It was both comforting and heartbreaking to read about little heart warriors who survived—and to remember those, like Teo, who were taken too soon. Tiny Tickers gives voice and visibility to these precious lives, raising awareness about congenital heart disease (CHD) and the importance of early detection.
Even though our story ended in tragedy, we are grateful for the early detection of Teo’s condition. From the moment he was born, everything possible was done to ensure his wellbeing. That knowledge gives us some measure of peace, even amid heartbreak.
Teo is in our hearts every second of every day. He will always be a part of our family, our thoughts, and our love. Though his time with us was brief, the impact of his life will last forever. He taught us courage, resilience, and the deep, unbreakable bond between a parent and child. Teo, our little heart, is gone too soon, but he is never, ever forgotten.
