Lilah’s CDH Story
When I was about 23 weeks pregnant with Lilah, we were told the devastating news that she had Left-sided Congenital Diaphragmatic Hernia (CDH). To make things worse, her liver had moved into her chest, placing her on the mildly severe end of the CDH spectrum.
The doctors painted a bleak picture, telling us Lilah had little to no chance of survival and, even if she did survive, her quality of life would be extremely poor. What made it even harder was that many of the doctors and nurses pressured me to terminate my pregnancy. They told me I was being unkind and cruel by choosing to continue, that Lilah would suffer, and that I was a bad person for holding onto hope. But my heart told me otherwise. I knew Lilah deserved every chance to fight.
I refused to accept the grim prognosis. After endless prayer and research, we found Tiny Hero. I spoke with Annie, who was the first in this devastating journey to offer Hope, options, and answers. She is an angel! Tiny Hero told us about a specialist in Florida, Dr. David Kays, who not only gave Lilah a 95% chance of survival but also prioritized her future quality of life. Dr. Kays was different from the doctors we had met before—he had dedicated his career to treating CDH. While most hospitals only see a couple of CDH cases a year, and nearly half of those babies don’t survive, Dr. Kays and his team see hundreds of cases. His experience and expertise made all the difference, and his hands-on approach—from showing up overnight to monitor critical situations to guiding every step of her care—was extraordinary.
With hope renewed and Tiny Hero by our side, we made the decision to move to Florida for Lilah’s birth, though I didn’t think traveling for care was even a possibility for our family. They not only made it possible for us to relocate, but they also treated us with such kindness and respect. I spoke with Joy Perkins from Johns Hopkins, and she set everything up and made it such a worry-free process. She even called Lilah by name. For the first time in what felt like forever, we felt genuine hope with every step.
Lilah was born into a battle for her life. She was intubated immediately after birth and placed on ECMO (life support) within her first 24 hours. Just two days later, she underwent life-saving surgery to move her organs back into place and to patch the hole in her diaphragm with a GORE-TEX patch. Those first days were overwhelming and terrifying.
For the first four months of her life, Lilah was fed exclusively through an NG feeding tube. Later, she needed a G-tube because she couldn’t gain weight on her own. After coming off ECMO, she remained oxygen-dependent for the first year and a half. By the time she was discharged from the hospital at 4 months old, she had endured half a dozen surgeries.
We were told to be incredibly cautious. Her immune system was fragile, and even a common cold could land her back in the hospital—or worse, it could be fatal if she caught RSV. Gaining weight would always be a challenge, and developmental delays seemed inevitable.
After her discharge, we moved to Texas to be near the care she needed and for the weekly therapy sessions that were also important to her progress. Despite all the odds, Lilah’s determination shone through. She learned to crawl, even while dragging her oxygen tank behind her.
After a year, Lilah had not only caught up but had exceeded every expectation. She graduated from all her therapies, came off all her medications (except oxygen), and eventually had her feeding tube removed. She was no longer just surviving—she was THRIVING.
Throughout this journey, I’ve learned so much about the importance of specialized care. Dr. Kays and his team were phenomenal—from the doctors to the nurses, therapists, and everyone in between. Their expertise and compassion transformed what could have been an impossible fight into a journey filled with hope and triumph.
Today, I look at Lilah and see a living miracle. She is a testament to faith, resilience, and determination. What the world told us was impossible, Lilah has made possible. She is our hero, and her story continues to inspire us every single day.
