Callie’s Story - Congenital Diaphragmatic Hernia (CDH)

On February 23, 2021, my husband, Joe, and I headed to my anatomy ultrasound at 21 weeks pregnant. We were beyond thrilled for this day to finally be here and we were so excited because our anatomy scan with our previous pregnancy was so much fun for us. We had a whole day planned after the appointment as my mom was babysitting our then 2-year-old daughter. We didn't want to find out our baby's gender, but we couldn't wait to see their features and guess the gender. The ultrasound was going so well, we had a lot of really good views of the baby, and we even got to see her yawn. Our hearts were bursting with love and joy. After the sonographer finished, she said the doctor would be in shortly to review the ultrasound as usual.

As I lay there on the exam table and it took longer and longer for the doctor to come in, I became anxious that something wasn't right. I tried to think that maybe they were just running behind, but once the doctor entered the room, I could tell by the look on her face that something wasn't right. She had a stack of papers in her hands - I immediately sat up and asked what was wrong with our baby. She explained that the baby has a Congenital Diaphragmatic Hernia (CDH) on the left side. My husband and I were equally confused because we had never heard of this. She went on to explain it in more detail along with the severity and the need for surgery immediately after birth. My mind went blank, my heart was racing. I felt like I couldn't breathe. I had never felt like this before. She explained some different options and outcomes and said terminating the pregnancy was an option as well. I didn't even have to think about it because terminating was never something I would have considered and Joe felt the same way. We knew whatever time we would have with our precious little baby meant the world to us and we would be thankful for that.

We left the appointment in complete shock. How is this happening to us? The uncertainty of everything and trying to process everything was surreal. We were living in a blur. We were immediately transferred to a high-risk OBGYN and met with a team from genetics the very next morning. The next several months were a blur of appointments and specialists. We were trying to be excited for our baby, but we didn't know if we would be planning to bring a baby home eventually or planning to mourn the loss of a baby. We had no idea what to mentally or physically prepare for. It was hard for me to discuss what was going on with our baby for a long time because I would become so emotional talking about it and explaining it. We regularly had ultrasounds and would watch them slowly outline our baby's "good lung" and take measurements to help determine our baby's head to lung ratio. The numbers started off pretty bad. We were told that our baby's lung growth "might not be compatible with life." There was a discussion of hospice care for our baby after birth. Week after week, we went back and our little fighter kept growing. Luckily, our numbers did improve. We stayed at the "moderate" level of severity. Our baby's bowels and stomach were up, but the liver stayed down and we had decent lung growth.

We were induced at 38 weeks and 6 days. My labor went really well and I had a sense of calmness come over me. I knew at that point, I couldn't do much besides be hopeful and grateful for our baby making it this far. We already knew this baby was strong and would put up a fight. We were surrounded by a team of doctors and nurses that were anticipating the baby's birth. Callie Grace Wagner was born on June 26, 2021, at 5:04 am. She weighed 6.6 pounds and was 19 inches long. I was able to feel her head as she was being born and it was absolutely surreal because I didn't know when I'd be able to touch her again. She came out and they put her on me for a brief minute for Joe to cut her umbilical cord. She let out a few little cries and then was immediately taken to the NICU for intubation. Joe was able to see her again briefly before she was transferred to the NICU, but it was about 2 hours before we could see her in the NICU.

When we first entered the NICU to see her, it was overwhelming. The machines, the sounds, all the tubes and wires, a team of doctors. And there she was, my perfect little girl. I no longer saw the tubes or the machines that were keeping her alive. I saw this little girl and my heart was so full of love. The first few days were completely overwhelming, meeting with so many doctors and learning more about her prognosis, all while trying to recover from birth.

Surgery was planned for July 2, 2021, at 6 days of life. The thought of surgery was terrifying, but we were confident in her team, they were wonderful and compassionate. The surgery went well and they were able to repair the hernia with her own muscle. Callie remained intubated for 18 days. We had a few really rocky days where we didn't know if she was giving up the fight and if things would take a turn for the worst. We continued to be hopeful and she continued her fight. Slowly but surely, she reached different milestones and she was making great strides. She was extubated to high-flow oxygen and eventually started feeds with breastmilk via an NG tube. We were able to hold her on day 10 of life finally and it was the most amazing and emotional experience. You never realize how much holding your own baby means to you until you cannot hold them for 10 whole days!

We rode a complete rollercoaster of emotions while in the NICU. We would make progress and have setbacks regularly. Oral feeds were a big struggle for Callie as she has a pretty severe aversion. We proceeded with a g-tube placement so that we could head towards the direction of home. After 67 long days, we were discharged home. We finally had our family of 4 under one roof and it was the best! Callie's big sister was so excited for her to be home and finally meet her. It was a new adjustment being home and it took a little while to get into a routine with everything, but we are loving life after the NICU. Callie is doing really well and her personality is emerging now that she is home. She still sees a lot of specialists very regularly and we still have a lot of obstacles ahead of us, but we will continue to fight. She has truly shown us how strong and resilient she is and that has given us so much hope!