By Chandra Bristol
Mommy to Evie
Congenital Diaphragmatic Hernia
Born June 2023
I had a very normal pregnancy with Evie. Despite being 44 and already having four kids, I knew she was a blessing—and rare—to be conceived so easily. At our 20-week scan, however, they noticed something abnormal. That’s when we first heard the term Congenital Diaphragmatic Hernia. Up until then, we had no idea what it was. We had never met anyone with that diagnosis.
My hopes and dreams for my daughter were simple: a normal delivery, a healthy baby. I worried about the typical things—Would she breastfeed? Would she be a good sleeper? I wondered what daycare would look like, how she’d bond with her sister Ember, who is just two years older.
But everything changed once we received her diagnosis. It went from wondering about her size to fearing for her survival. We dove into research, learning everything we could about Congenital Diaphragmatic Hernia so we could make the most informed decisions possible.
We began care at Children’s Hospital in St. Louis under the fetal care team. There were many sonograms, tests, and consultations. After an MRI, we learned the full extent of her condition—her stomach, intestines, and liver were all inside the hernia in her diaphragm. Because her liver was also “up,” her case was considered more extreme, reducing her survival rate to 40%.
After hearing that, we started searching for another option. Through God and many other parents, we were led to Dr. Kays at Johns Hopkins All Children’s in St. Petersburg, Florida. I made a phone call, and the next month we drove down to meet his team.
Meeting Dr. Kays changed everything. He gave us a 90% survival rate and estimated a 75% chance of needing ECMO. He believed he could have her home with us in two to three months. The biggest issue with CDH babies is breathing at birth. Because other organs crowd the chest cavity, there’s no room for lungs to develop properly.
With the support of my parents, partner, and sister, I relocated to Florida and spent the next three weeks finishing up pregnancy care with my two-year-old daughter by my side. We stayed close to the hospital, preparing for delivery. My induction was scheduled for June 13, 2023. Up to that point, I tried to soak in every bit of normal life—days at the beach with my sons, parents, and sister—before the months ahead in the hospital.
My birth story was a little shocking. The plan was for me to deliver in the OR next to the CDH team, with my doctor present. But Evie, my fifth and smallest baby, weighing just over five pounds, had other plans. Once I was induced, everything moved quickly—so quickly that she was born in the hallway. I didn’t even make it to the OR.
All I remember is the nurse saying, “Don’t push,” and I replied, “It’s too late—she’s already out.” They looked under the blanket and there she was. The doctor picked her up and she cried. Many CDH babies don’t cry because of their underdeveloped lungs—but she did. I was able to hold her for a second before she was passed to the Stork team, who cared for her while we waited for the CDH team to arrive.
It was frightening—everything was supposed to go a certain way, and then it didn’t. But the team arrived, and by the grace of God, Evie was able to breathe on her own for a few minutes while everyone did their part to care for both of us.
Evie was born with left-sided CDH. Thirty percent of her liver was up, along with her spleen, bowel, and stomach. She had a large C defect with only 20% of her diaphragm. When she was three days old, we had an intense scare, so her hernia repair surgery was done at six days old. Her stay in the hospital as she recovered had many ups and downs. We were there day and night, learning to care for her while also caring for our other daughter. We will always be grateful for the help we received from our family in Georgia, and the prayers from friends and family all over.
From the start, we learned that our daughter Evie was, and still is, a tiny hero—a little warrior. She was extubated from oxygen and we were able to hold her for the first time on July 4, three weeks after her birth. She spent the next month learning to breathe on her own, nurse, and take a bottle—no easy feat for CDH babies, as feeding doesn’t come naturally.
We were incredibly lucky that she never needed ECMO. She eventually learned to nurse and gained enough weight to be discharged on July 31—46 days after her delivery.
When we arrived home, Evie was immune compromised due to her small lung size and recent oxygen support. I made the decision to quit my teaching job to stay home and care for her and our other children. It was the best decision we could have made for her health and our family’s well-being. Her father worked endlessly to support us, and I’ll always be thankful for that.
Today, it’s hard to believe where we started. Evie is 22 months old. She’s still nursing and still tiny—just 19 pounds and in the 3rd percentile—but she is smart, strong, and fierce. She’s a loving little sister to Ember and her older brothers. She loves to dance, push baby dolls in her stroller, and jump on her trampoline. She is off all medications, no longer needs oxygen, and has hit all her developmental milestones.
We are so happy and blessed.
Our hope is that more people become aware of CDH, and that doctors continue to learn from the amazing program at Johns Hopkins and Dr. Kays. We hope that Evie lives a normal, full life, stays strong, and that—as her family—we never take a single thing for granted. We don’t sweat the small stuff anymore. Life is precious.
The pictures On Angels’ Wings provided celebrating Evie’s first birthday were wonderful. I am forever grateful for all the programs that helped us along the way. My boys were able to be in the photos too, and it truly meant a lot to all of us. We all suffered in our own way during the time I was away in the hospital with Evie—but we made it. We’re in the process of scheduling our next session with OAW.
The memories are forever, and the images captured the deep love we have for our daughter—and how much she is cherished by her entire family.
