Zayna's Story - Congenital Diaphragmatic Hernia (CDH)

On January 31st 2018, I went in for a routine 32-week checkup. My daughter constantly kicked me in the ribs, but I mentioned to the doctor that she was a little less wiggly, so he ordered a non-stress test and an ultrasound. Braxton Hicks contractions and a strong heart beat. Perfect. Then the quickest ultrasound ever. After waiting for 45 minutes, the doctor pulled me back into his office and said that my daughter’s heart was strong and he doesn’t have any concerns for that. Then he broke me. He said my daughter has a hole in her diaphragm which is causing her internal organs to push on her lungs and is keeping them from growing. He immediately made an appointment for the high risk OBGYN across the street because they don’t deal with high risk pregnancies at this office. He apologized then left. To say I was heartbroken is an understatement. I immediately started googling diaphragmatic hernias and tried to find some reason as to why this happened. The diaphragm fully forms by week 12. At that time, I was 2 weeks away from getting married. My stress levels were through the roof. I worked at a coffee shop and drank 1-2 cups of coffee a day. Could that have been it? I drove myself mad trying to find a reason. Fast forward 2 months, and I have gone through most of the stages of grief. I was stuck on anger and sadness the longest. We met with genetic counselors, multiple surgeons/specialists, social workers, different OBs, and finally came up with a game plan.

On March 21st, I was 39 weeks pregnant and I was induced for labor. I chose to be induced because I wanted the team ready for when Zayna was born. I didn’t want it to be a surprise labor in the middle of the night. After 3 days of labor, my OB said it was time to get a C-section. My nerves got the best of me, and I was shaking the entire time. I spoke complete nonsense to my husband, who was having his own panic attacks, just to keep my mind busy from thinking about the fact that my body was being torn open. At 10:48am, Zayna Mahrie Birjandian was born. 8lbs 12oz, and this fighter screamed. She actually SCREAMED. We were told that wouldn’t happen. We were told she might not seem responsive or have any of the normal “just born baby” things. But she cried. Her lungs worked a little bit. Within seconds, she was intubated and wheeled off to the NICU. Meanwhile my epidural shifted, and I felt the most agonizing pain of my life while they stitched me back up for another 30 minutes. After 3 hours in the NICU, Zayna was transported to Seattle Children’s Hospital where they had a team ready to get her settled in. I was supposed to stay at UW Medical Center for 2 days to recover. However, I was losing my mind, so I lied about everything in my recovery so I could leave and see my daughter.

On March 25th at 7pm, I was reunited with my daughter. The love and the heartbreak I felt that first night will always be imbedded in my mind. On the 27th, she underwent repair surgery. The surgeon said the hole was pretty significant and there was no diaphragm near the ribs, so in order to suture her up without a patch, they had to wrap the end of the diaphragm around her ribs. Then the recovery began. Everyday, either her feeds or her oxygen were adjusted. CDH is not just a hernia. It’s not just a surgery that will fix everything. Her stomach, intestines, lungs, and heart were all either smaller than they should have been or were in the wrong spot in her body. We had to give her time to slowly let her organs grow. It was the longest 3 weeks of my life. On day 21 of her hospital stay, she was low enough on the oxygen level that they moved her from the NICU to the regular surgical floor. We were now allowed to sleep in the same room as our daughter. Absolute heaven.

After 42 days in the hospital, Zayna came home with an NG tube and medication for reflux and her heart. She had multiple runs of SVT while in the NICU, and the cardiologist didn’t want her lungs to work even harder to bring her heart rate down, so she was put on Propranolol. Zayna struggled with weight gain. She struggled with reflux. Most CDH babies do. After a month home, we got rid of the NG tube. At 8 months old, we stopped the heart medication. At 10 months old, her reflux medication was removed. She is now a 1 year old with the sass and fighting spirit of a true warrior princess. Because of her NG tube, she was delayed with tummy time which caused a delay in most of her gross motor skills. She didn’t sit up by herself until she was 8 months old. Didn’t crawl until 10 months. But that is perfectly fine with me. For my baby survived. From a condition that 50% of babies don’t live through, my baby survived. And for that, I am forever grateful. She went through more interventions in the first month or her life than most people do in their whole lives. She continues to amaze everyone around her with her strength, determination, and will power. Zayna truly is our tiny hero.