Kayleigh’s story began like so many others, filled with joy and excitement as we awaited the arrival of our baby girl. But at my 20-week ultrasound, that joy was replaced with fear when we learned something wasn’t quite right. The doctor came in and informed us that she suspected our sweet girl had Tetralogy of Fallot (TOF), a congenital heart defect that would forever alter her path. She referred us to maternal-fetal medicine (MFM) for additional ultrasounds, and from that moment, our pregnancy took a different turn—one we could never have prepared for.
As the pregnancy progressed, it became increasingly complicated. At 30 weeks, I developed severe polyhydramnios, a condition where there is too much amniotic fluid, which led to even more risks. By 32 weeks and 6 days, my labor began. It was too far advanced to stop, and at that point, the uncertainty and fear of what lay ahead became overwhelming. We welcomed Kayleigh into the world, weighing just 5 lb 8 oz, our heart warrior, a tiny but strong girl already fighting to survive.
But as soon as she was born, we learned that her fight would be even harder than we expected. Along with Tetralogy of Fallot, Kayleigh was also diagnosed with DiGeorge Syndrome, a rare genetic disorder that affects many parts of the body, including the immune system and heart. These two conditions made Kayleigh’s health even more fragile, and her battle was far from over.
Kayleigh spent the first 2 1/2 months of her life in the NICU and PCARD floors, fighting for every breath. In those early days, she had a G-Tube and Nissen procedure, which was essential for her feeding and to prevent reflux. She also underwent a cath lab procedure to help manage her heart condition. It was a time of constant worry, sleepless nights, and endless medical procedures, yet Kayleigh proved to be a fighter. We watched as she fought off respiratory illnesses and viruses, each hospital stay a reminder of how resilient she was.
The doctors and nurses in the NICU did everything they could, but it was Kayleigh’s strength and determination that got her through. She faced challenges that no baby should have to face, but every day she showed us that she wasn’t just surviving—she was fighting to thrive. It was through her determination that we found our own strength as parents. There were moments when it felt like the road ahead would never end, but Kayleigh’s spirit kept us hopeful, reminding us that anything was possible.
At 8 months old, after countless tests and procedures, Kayleigh was finally strong enough for her first major heart surgery—a valve-sparing repair. The day of the surgery was filled with fear and hope. I remember the feeling of signing the consent forms, knowing that this was a pivotal moment in her life. The thought of what she had already been through, and what lay ahead, made my heart ache. But when the surgery was completed, we were told that everything had gone as planned. The relief we felt was overwhelming, but we knew that this was only one step in her long journey.
Kayleigh’s road to recovery was nothing short of remarkable. Despite the challenges, she began to thrive. She was extubated, the feeding tube came out, and her medications were slowly reduced. We moved to step-down care, where we learned how to care for her ourselves—administering her medications, learning about wound care, and being trained in feeding therapy. We even learned infant CPR, as heart parents know that being prepared for the unthinkable is just part of the journey.
Over time, Kayleigh’s progress in her therapies—feeding therapy, occupational therapy (OT), and physical therapy (PT)—has been a constant reminder of just how far she has come. She has exceeded every milestone we set for her and continues to show the world her determination and strength. Her bright smile and contagious laugh bring joy to everyone around her, and every day we are reminded of how lucky we are to be her parents.
We are so incredibly proud of our girl. She has already faced so many obstacles in her young life, yet her courage and tenacity never waver. Her journey has not been easy, but seeing her grow stronger every day has made every struggle worthwhile. Kayleigh is not just a survivor—she’s a fighter, a heart warrior, and a reminder that even in the face of adversity, love and determination can overcome anything.
Although Kayleigh’s heart has been repaired, we know that her journey is far from over. She will always live with Tetralogy of Fallot and DiGeorge Syndrome, and there will be many more medical appointments, tests, and procedures ahead. But as her parents, we will continue to stand by her every step of the way. We will fight for her, just as she has fought for her life. And with each new challenge, we will remind ourselves that, as long as we have love, faith, and hope, anything is possible.
Kayleigh’s story is not just about her heart condition; it’s about resilience, strength, and the power of love. Her journey has changed us in ways we never could have imagined, and we are forever grateful for every moment we have with her. She is our miracle, our heart warrior, and the greatest blessing we could ever ask for.
We continue to be amazed by Kayleigh’s strength, and we will keep cheering her on through every step of her journey. She is living proof that even the smallest hearts can carry the greatest strength.
How has Kayleigh’s journey inspired you?
