From the very beginning, Violet’s story was wrapped in dreams and certainty. My partner and I were overjoyed to learn we were expecting our third child. Our family already felt full of laughter and love with our two older children, and we eagerly imagined the newest chapter of our lives. From the moment I saw the positive test, I felt in my heart that this baby was a girl. We didn’t even discuss boy names. Everything felt simple, joyful, and perfectly aligned. We pictured pink blankets, tiny dresses, and a future filled with first steps, first words, and endless family memories.
But life has a way of reshaping even our most certain plans.
At 23 weeks, during what I expected to be a routine ultrasound, our world shifted in an instant. The doctor told us that Violet had Left-sided Congenital Diaphragmatic Hernia (CDH). Her liver had moved into her chest cavity, putting pressure on her developing lungs and placing her in a higher-risk category. I had never heard of CDH before that day. Suddenly, I was thrust into a world of medical terms, statistics, and devastating possibilities. The room felt smaller. The air felt heavier. It was as if time stopped, and all I could hear was the echo of words like “severe,” “high risk,” and “uncertain outcome.”
Some medical professionals gently—and not so gently—suggested that terminating the pregnancy might be the “kindest” option. They spoke about suffering, about low survival rates, about quality of life. Their words crushed me. How could anyone define my daughter’s future before she had even taken her first breath? In my heart, I knew Violet was more than a diagnosis. She was my child. She was already loved. And I believed, with everything in me, that she deserved every possible chance to fight. I refused to let fear make that decision for us.
In the darkest nights, when sleep wouldn’t come, I searched for hope. I read medical articles, joined support groups, and connected with other parents who had walked this road. That’s when I found Tiny Hero. Through their community, I discovered stories of babies who had survived CDH—even in severe cases. Their journeys were terrifying and inspiring all at once. Again and again, one name stood out: Dr. David Kays. Families spoke of him with gratitude and awe, sharing survival rates and stories of children who were now thriving. For the first time since the diagnosis, I felt a spark of real hope.
Through Tiny Hero, I was connected with Joy Perkins. From our very first conversation, I felt seen—not just as a patient or a case, but as a mother. Joy understood the fear, the heartbreak, and the strength it takes to keep going. With her guidance and encouragement, I made one of the hardest decisions of my life: to relocate to Florida so Violet could be born under the care of Dr. Kays and his team.
As a single mother running a small plant nursery, the idea of moving across the country felt overwhelming. I worried about finances, about leaving my older children, about how I would hold everything together. But Tiny Hero’s relocation grant and support from organizations like Angel Wings made what seemed impossible become possible. It wasn’t easy, but love has a way of giving you courage you didn’t know you had.
At 31 weeks, I lost my mucus plug, and fear rushed in again. Within a day, I was on a flight to Florida. Saying goodbye to my two older children for what would become five long months was one of the hardest moments of my life. I held them tight, trying to be brave for them, even as my heart ached. I didn’t know what lay ahead for Violet or for me. All I knew was that I had to be strong—for all of my children.
Violet arrived on her own terms on February 27th, 2023. She weighed 7 pounds 10 ounces—strong and big for a CDH baby. For a brief moment, I let myself believe this was a sign that everything would be okay. But then there was no cry. No sound. Just silence. She was immediately intubated and rushed away. I didn’t get to hold her. I didn’t even see her face. I remember staring at the empty space where she should have been, my heart breaking all over again. In that moment, Dr. Kays looked at me and said, “I’m going to take care of her.” Those words became an anchor. They were the first true sense of peace I had felt in months.
The days that followed were a blur of machines, monitors, and impossible decisions. On her second day of life, Violet needed to be placed on ECMO, a life-support machine that would give her body time to rest and heal. The next day, she went into surgery to repair her diaphragm. The surgery lasted four long hours. A GORE-TEX patch was used to repair her diaphragm, and a CPAM mass was removed from her lung to allow for better lung development. When I was told the surgery was successful, I cried tears of relief and gratitude.
But the challenges didn’t end there. Violet developed deep vein thrombosis, and once we were released, I had to give her daily Lovenox injections for six weeks. Giving shots to my tiny baby was heartbreaking. Every injection felt like a reminder of how much she had already endured. Still, she kept fighting.
Violet spent 74 days in the hospital. Feeding was difficult. Reflux made every bottle a challenge. She came home on a small amount of oxygen and with an NG tube, but even then, we celebrated. At just five months old, she came off oxygen completely. Each small victory felt like a miracle.
Today, Violet is one year old—and she is thriving. She is strong, curious, and full of joy. She loves food, plays with her toys, and is already cruising along furniture. She has surpassed expectations both physically and cognitively. Watching her reach milestones that once felt impossible fills my heart with overwhelming gratitude. Every laugh, every smile, every wobbly step feels like a gift.
I will forever be grateful to Dr. Kays and his incredible team for their skill, compassion, and unwavering dedication. I am equally thankful to Tiny Hero and the community of families who shared their stories and gave us hope when we needed it most. We did not walk this journey alone—and that made all the difference.
Violet’s story is a testament to resilience, to hope, and to the power of a mother’s love. She has changed our family in ways I can’t fully put into words. She has taught us to fight, to believe, and to hold onto hope even when the odds feel overwhelming.
If there is one message I want other parents to hear, it is this: a diagnosis is not a destiny. There is hope. There is support. There are specialists and communities who will walk beside you. And most of all, there is incredible strength within your child—and within you.
Violet’s journey is only beginning. And as her mother, I will continue to fight for her, just as she has fought for herself. Together, we will keep moving forward—guided by love, fueled by hope, and forever inspired by the little girl who taught us what true courage looks like.