By Cassidy Elsie
Mommy to Maddox
Congenital Diaphragmatic Hernia
Born July 2018
In 2018, I went in for a routine pregnancy checkup with my one-year-old daughter in tow. We got checked in and called back, and I went through all the usual steps—questions, urine sample, and conversation about how things were going. My OB doctor came in and, as part of the appointment, it was time to listen to the baby’s heartbeat.
Once she found the baby, she was really struggling to keep the heartbeat on the monitor. I could tell something was off. After trying for what seemed like hours, she told me she wanted me to go to ultrasound. My daughter and I packed up and headed to the other side of the office.
It started like any normal ultrasound. I was around 15 weeks at the time, and we found out our baby was a boy. But after what felt like hours of the tech coming in and out, trying to make sure she got what the doctor needed, my heart sank. I knew something was terribly wrong. I kept asking if the baby was okay, and while she kept reassuring me, I knew she couldn’t tell me the truth—I was so scared.
Eventually, she told us we could leave. I just remember all these thoughts flooding my head: That’s it? I have to wait? I just walk out of here like everything’s okay? What about the rest of my appointment?
That night, I went to bed and made sure my phone was on loud. At 7 a.m., the phone rang—it was the hospital. My OB doctor was on the line. She asked us to come in as soon as possible. She said there wouldn’t be anyone at the front desk, but that they would be waiting for us. In that moment, I knew something was wrong.
I immediately broke down. But I picked myself back up, got ready, and we left.
When we arrived, our amazing nurse greeted us, and a few moments later, the doctor walked in. Then came the crushing news: “After looking at your ultrasounds, your baby has Congenital Diaphragmatic Hernia. But you will have to go to St. Louis to have it confirmed.”
I remember saying, “Oh, it’s just a hernia… no big deal.” She responded gently but firmly, “No, this is life-threatening.”
Our OB explained what CDH was and provided us with information, which was incredibly helpful in that moment. She asked if there was anything she could do. We told her no—and she said, “Then let me pray for you.” We stood in a circle, held hands, and prayed. I knew everything was going to be okay, and I clung to God for guidance for the rest of my pregnancy.
A few weeks later, we went to our appointment in St. Louis at maternal fetal medicine, where we met some of the best people. Our son’s diagnosis was confirmed, and they said they were extremely surprised our OB’s office back home had even caught his CDH.
Because our local hospital didn’t have the equipment to handle our case, we needed to deliver at Barnes. At 39 weeks, on July 9, 2018, we packed up and went to be induced.
The team discussed delivering in the surgical suite because of the number of doctors, nurses, and other staff we would need, and if anything went wrong. Ultimately, we decided to stay in the labor and delivery room.
We started with Pitocin and then moved to inserting a balloon to get me to 5cm dilated. In the early morning, the balloon came out. A few hours later, while I was asleep, I felt a big pop—my water had broken. Intense contractions followed. I got up and rocked back and forth as much as I could.
The contractions were so bad we slowed the Pitocin, but it didn’t help. To calm me, let me rest, and help me get through delivery, they suggested an epidural. I got it around lunchtime and took a nap before it was time to deliver.
Around 1 p.m., people were coming in and out of the room, prepping for delivery. There were about ten people in the room when we started pushing. I remember watching everyone—everyone had a job. I noticed someone monitoring the screen. Our son’s heart rate was dropping with each contraction, and as I pushed, it dropped even more.
I saw the panic in their faces. They told me to rest and push every other contraction. I pushed a few more times, and then they said if I didn’t get him out with the next contraction, we would need an emergency C-section. I was so tired, but I gave it everything I had. He came out around 3 p.m.
He had some color, but he was very limp, and I didn’t hear him cry—just a whimper. The only part of him I got to really see were his feet. He had long toes and long feet. They intubated him immediately and placed an umbilical line. Once he was stabilized in the incubator, I watched them wheel him away.
I remember feeling so helpless, knowing there was nothing I could do. What did he look like? I hadn’t even seen him. I got to see a picture of him, and that was it—until I was able to visit the NICU that evening around 8 p.m.
Maddox was in the hospital for 94 days. At 10 days old, he had his first hernia surgery; they were able to use his muscle to patch his diaphragmatic hernia. But his CDH caused other hernias, which he has since had repaired through three more surgeries. There’s still one more we’re monitoring to determine if it needs surgery now or can wait, but he will need another surgery eventually.
Asthma is another thing we struggle with, but it’s managed—just like when he gets sick, which can be harder on him. Recently, he was diagnosed with Autism and ADHD. We are still waiting on final results from genetic testing, where three markers came back needing further review.
We see a lot of specialists, and he’s on medication to manage several diagnoses. We plan and work around things, but overall—he’s like any other child.
My hopes for him? I hope for happiness, health, love, and wellbeing. I hope life is fair to him. That he surrounds himself with people who see his worth and respect him. Friends who cherish him. Jobs that inspire him to be the best he can be. I hope he dreams of all the possibilities and ways he can contribute to changing the world.
The pictures On Angels’ Wings provided mean the absolute world to us. They show everything we’ve been through as a family. They are powerful. No matter what tried to hurt us, drag us down, or beat us—we got through it as a family.
I’ve told other parents about OAW because what the organization does is incredible. The resources, the pictures, all of it. It’s such a bright light during a difficult time. It helped heal a part of us we didn’t even realize needed healing.
Looking back at our pictures—especially during hard moments—reminds us what we’ve been through and what we’ve overcome.
