Our journey with Violet began like any other pregnancy—filled with excitement, joy, and dreams for the future. My partner and I were thrilled to welcome our third child into the world, already blessed with two amazing older kids: Keelie, Cashus, and now, Violet. From the moment I found out I was pregnant, we were certain that this baby was a girl. We didn’t even consider boy names—everything about our future felt certain, joyful, and uncomplicated. But little did we know, life had other plans for us..
At 23 weeks pregnant, during a routine ultrasound, I was given news that would change everything. I was told that Violet had a condition called Left-sided Congenital Diaphragmatic Hernia (CDH), and that her liver had moved into her chest cavity. This placement put her at a higher risk, categorizing her on the mildly severe end of the CDH spectrum. My world turned upside down in an instant. I had never heard of CDH before, and the news was devastating. The doctors were grave, explaining that CDH often results in babies not surviving, and for those who do, the quality of life is often severely compromised.
The news came with a crushing weight. I was told by some doctors and nurses that terminating the pregnancy was the kindest option, as it would spare Violet a life filled with suffering. I remember the pressure they put on me, the comments about what was “right” and “kind.” It was agonizing. How could anyone tell me what was best for my daughter without truly knowing her potential? I knew in my heart that Violet deserved every chance to fight, no matter how slim the odds. I couldn’t give up on her.
In the midst of this overwhelming fear, I started researching. I read everything I could find about CDH, and after countless sleepless nights, I stumbled upon Tiny Hero. Through Tiny Hero, I connected with other parents who had faced similar diagnoses for their babies, some with conditions even more severe than Violet’s. Their stories filled me with both fear and hope. One name kept popping up in these stories—Dr. David Kays, a leading specialist in CDH. I was told that Dr. Kays and his team had a track record of success, with survival rates of 90% or higher for babies with conditions like Violet’s. That was the hope we needed.
I reached out to Tiny Hero, and through their network, I was introduced to Joy Perkins. The moment I spoke with Joy, I felt a shift. She offered me the support and encouragement I so desperately needed. She didn’t just talk to me about the medical details, but she spoke to me as a mother who understood the pain of seeing her child struggle. With Joy’s guidance, we decided to take the leap and relocate to Florida for Violet’s birth and care under Dr. Kays.
It was a decision that filled me with doubt and fear. I was a single mother, running a small plant nursery to support my family. I had never imagined I would be in a position to move across the country for my child’s care. But thanks to Tiny Hero’s relocation grant and organizations like Angel Wings, which helped with flights, I was able to make it happen. It wasn’t easy, but the support from Tiny Hero, combined with my determination as a mother, made the impossible seem achievable.
At 31 weeks pregnant, I lost my mucus plug. It was a scary moment, and I called the Ronald McDonald House to see if they could accommodate me early. Within a day, I was on a flight to Florida. That night, I said goodbye to my two older children for five months, not knowing what lay ahead for Violet and me. I was filled with anxiety, but I knew I had to stay strong for my daughter.
Violet’s birth was scheduled for 37 weeks, but she had her own timeline. She came on February 27th, 2023, weighing 7 lbs 10 oz—surprisingly healthy and big for a CDH baby. But the moment I saw her, my heart dropped. There was no cry, no sound—only silence. She was immediately intubated and rushed to the CDH unit for care. I couldn’t hold her or see her face, and I remember just staring in disbelief as Dr. Kays and his team quickly took control of the situation. I was terrified, but Dr. Kays assured me, “I’m going to take care of her.” His words were the first glimpse of peace I had felt since the diagnosis.
The next few days were a blur of emotions and medical procedures. On day two, Dr. Kays came to me with heartbreaking news: Violet would need to be placed on ECMO (a life-support machine). The decision wasn’t easy, but it was necessary to give her a fighting chance. She was also scheduled for surgery to repair her diaphragm the following day. Violet’s journey had just begun, and we were hanging on to every moment, every decision, praying that this was the right path for her.
The surgery, which lasted about four hours, was a success. Violet had her CDH repair, and a GORE-TEX patch was placed to repair her diaphragm. In addition, the surgeons had to remove a CPAM (a mass in her lung that was obstructing normal lung development). The road to recovery wasn’t easy. Violet developed deep vein thrombosis, and I had to administer Lovenox injections every day for six weeks after we were released from the hospital. It was heartbreaking to give my tiny baby these shots, but I knew they were necessary for her recovery.
Violet spent 74 days in the hospital, overcoming countless hurdles. Learning to eat was particularly challenging due to reflux, but with medication and time, she began to progress. When she was finally discharged, she was on a small amount of oxygen and had an NG tube, but we were optimistic. At just five months old, she came off oxygen completely, and by then, she had already defied so many odds.
Violet’s resilience is something I can’t even begin to describe. She’s now one year old, and she’s thriving. She has surpassed all expectations and is developing cognitively and physically ahead of her peers. Violet loves food, playing with her toys, and she’s already learning to coast furniture! Watching her reach each milestone has been nothing short of miraculous. We are so incredibly proud of her.
I owe so much of Violet’s survival and success to Dr. Kays and his amazing team. Their expertise, compassion, and commitment gave us hope when we had none. Without them, I don’t know where we would be. I am also forever grateful to Tiny Hero for connecting us to this life-saving network of care. I can’t imagine going through this journey without the support of Tiny Hero and the countless families who shared their experiences with us.
Today, Violet’s story is one of hope, resilience, and unwavering love. She has become the heart of our family, and we are constantly amazed by her strength. She has taught us so much about perseverance and the power of believing in a brighter future.
If there is one thing I’ve learned from Violet’s journey, it’s that no matter how bleak the diagnosis, there is always hope. Parents facing CDH or any difficult diagnosis should know that they are not alone. There is support out there, there are specialists who can help, and there is always a reason to fight for your child.
Violet’s story has only just begun, and I can’t wait to see what the future holds for her. As a mother, I’ll continue to fight for her, just as she has fought for herself. And through it all, we will hold onto the love, hope, and strength that have carried us through this journey.