Ryan's Story - Congenital Diaphragmatic Hernia (CDH)
Ryan’s CDH journey began on December 20, 2017, after we were referred to OSU Wexner MFM clinic due to an abnormal finding at our 20-week scan at the OB/GYN. As the doctor proceeded to tell us about CDH, I couldn’t stop the tears from rolling down my cheeks. I was trying so hard to listen, but everything just started moving in what seemed to be slow motion. The doctor told us that termination was probably the best idea because most of the time these babies never make it. My husband and I decided that we’re all in this together and continue on with the pregnancy. The next few days I searched for groups on Facebook and found that this diagnosis wasn’t that rare at all, there were survivors. I finally got up enough courage to post something and what happened next was nothing short of a miracle in the making. I received a message from a very familiar name asking, “Are you Rachael Brasseur’s sister?” Quick to reply, Ashley Beatty-Smith, a girl that I had known since she was little, was messaging me about CDH. She starts telling me about this doctor who is a specialist in Florida with 20 years of experience, and that her and her husband are headed down there soon to meet with him. After more research, he almost seemed too good to be true. On a Tuesday afternoon, sitting in a parking lot I decided to call Joy Perkins. I couldn’t tell you much about that phone call other than she told me it’s going to be okay. A few days later I took a call from Dr. Kays. He asked me questions about the baby what I knew about his diagnosis at this point. He explained to me what I needed to know, what I need to ask the doctors here, and he broke down CDH (the buckets). I felt like there was hope after that call. I felt empowered to have more knowledge.
After further testing here at the children’s hospital Ryan was diagnosed with a right sided liver up hernia and given a 20% chance of survival. The general surgeon told us to start preparing to not leave the delivery room with a baby. My husband and I knew leaving the hospital that day we were going to Kays. March 9, 2018, we consulted with Dr. Kays where he gave us a 90% chance of survival. Dr Kays also informed us that the Children’s Hospital in Ohio was wrong, that Ryan didn’t have a Right-Sided hernia as they diagnosed, it was a Left-Sided and liver up hernia. Shocked and even more scared to go back home we made the choice to relocate to St. Pete on April 3rd. Little did we know that the Polyhydramnios I was diagnosed with would send me into early labor a little over 7 days later.
Ryan was born April 14, 2018. He let out the biggest two cries that I prayed so hard for. Those cries were my baby telling me he was ready to fight. At 36 hours old Ryan was placed on ECMO and at exactly 48 hours old, Dr. Kays repaired his hernia. Ryan’s surgery lasted about 7.5 hours long due to complications of a cyst bleeding and his organs were not fitting back into his abdomen. Ryan received an additional patch in this stomach so it could be shut. After 18 days, Ryan was taken off ECMO and cannulas pulled at the same time due to a Tachycardia issue. Ryan was moved to NICU where we worked on getting off the vent, and possibly start feedings. I’ll always remember Dr. Stone coming in and having a pep talk with Ryan and how he needed to be a good eater. At 31 days I finally got to hold Ryan for the first time. Day 45 I fed him for the first time. And day 70 we left the hospital as a family.
Today Ryan is a very active little boy and loves to smile. I always say I think Dr. Kays added a little extra ornery while doing his surgery.
There’re days when I look at him and I still cry at the miracle he truly is. We couldn’t have done this without the support of our community, JHACH, and lastly without Tiny Hero for helping us have the power and resources to get to the best place for him. My family is forever grateful for you all.