Brynlee’s Story - Congenital Diaphragmatic Hernia (CDH)

My name is Carissa, and this is the story of my daughter, born with CDH. Brynlee was born on June 22nd, 2020, exactly 2 weeks early. I had an uncomplicated pregnancy, and the radiologist reports from each ultrasound were unremarkable. As soon as she was born, however, they placed her on my chest for about a minute before noticing she was struggling to breathe. The nurses acted quickly and brought her to an isolate for further assessment. She wasn't breathing any better with help from an oxygen bag, so they raced her to the NICU where they did an ultrasound and immediately realized she had a right-sided hernia in her diaphragm. A pediatrician intubated her, and a STARS air ambulance was called. (In Alberta, STARS is an emergency trauma rescue team) She was brought to Alberta Children's hospital in Calgary, about 2 hours away from the hospital I delivered in, where they knew how to care for a baby with CDH. My husband and I were only an hour behind, as I was able to be discharged to follow our daughter.

This was all such a surprise for my husband Mitch and I. We had to leave our 3-year-old and 18-month-old boys at their grandparents, having been told Brynlee would be at Alberta Children's for at least a few months. It was the hardest thing I've ever had to do, and I felt as though my heart was being torn in two directions. We immediately felt that we were in good hands with the medical team at Alberta Children's. They were caring and compassionate towards us, considering how much of a shock this was to our family. They explained CDH in greater detail and laid out what to expect in the coming weeks. Brynlee was able to be baptized in the hospital right before her surgery, something that was important to us. She had her surgery to correct the hernia two days after she was born. Her surgical team was amazing and talked us through the whole thing. They were able to maneuver her organs into her abdomen and close the hernia with her own diaphragm muscle, thus lowering her risk of infection and recurrence by not having to use mesh.

Brynlee stayed in the NICU at Alberta Children's for a total of 58 days. She was intubated for almost a full month, and I was only able to hold her with the help of multiple nurses. I finally got to breastfeed her a few days later, and it was so wonderful. After having two babies with no issues and being able to hear them cry, comfort them, snuggles them, hold them all day long, and breastfeed right away, this was extremely hard for me. My husband and I stayed at the nearby Ronald McDonald House, and our two sons were able to come visit us a few times, thankfully. Brynlee was healing slowly, with a few steps forward and what felt like many steps backward. She struggled a lot to wean off her pain medications and did have a few days of bad withdrawal which was so heartbreaking. But she was so brave and such a rockstar (as the nurses called her). It took nearly two months, but she was discharged on home oxygen two days before her two-month birthday! Because of COVID, my husband and I were the only ones to ever have met her. I'd been waiting two long months to introduce her to her big brothers, and it was such an emotional moment.

Brynlee remained on oxygen and medication for pulmonary hypertension as well as acid reflux for a few months after being discharged. We have gone up to Calgary for multiple follow-ups, and each time, the medical team has been blown away by our girl's progress. As I write this, she is 3 days away from her first birthday. A birthday I wasn't sure we'd ever celebrated. Her diagnosis was so scary, and there were times in the first few weeks we weren't sure if we'd be leaving the hospital with a baby. I'm forever grateful to her surgical team and the NICU staff, as well as our community, who rallied around us with donations, support, and prayers. Today, Brynlee is off all of her medication, developmentally on track, and the joy of my heart.