Grayson's Story - Congenital Diaphragmatic Hernia (CDH)
Our CDH story starts at my 19-week ultrasound. I saw a neonatologist as a precaution because my last pregnancy ended quite devastatingly at 22 weeks due to twin-to-twin transfusion syndrome. They were twin boys and I can't quite begin to explain that loss. Having had 2 other children born healthy, with uneventful births, this was a blow. So, as you can imagine, when we found out at 19-weeks my baby had a life-threatening congenital birth defect, I thought to myself, why was I being punished? Haven't I suffered enough? I was in shock, at a loss for words. Even my doctor, knowing my past history, cried with me in the room as he tried explaining what our baby and we would have to face with a Congenital Diaphragmatic Hernia (CDH) diagnosis.
The next few weeks and months of pregnancy would be filled with worry and uncertainty—many doctor visits, specialists, amniocentesis, etc. I didn't get to enjoy my pregnancy as most pregnant women do. No registry, for I was uncertain my baby would even survive. It did not help matters when one doctor suggested termination. We began doing online research to educate ourselves, and we came across Dr. David Kays in Gainesville, FL. We called right away for an appointment and were seen relatively quickly. After our first appointment, we were offered hope for the very first time. We felt a glimmer of hope for our unborn son. We live in Orlando, so I relocated to Gainesville and stayed with a family member who happened to live there - a true blessing. I left my other two children in the care of my husband and family members during this transition. It was quite difficult leaving young children at home, but I had to do whatever it took to get my son the best possible medical care.
Grayson was born at 38 weeks with a left-sided CDH, operated on at a day old, and spent 30 days in the NICU. No ECMO. He came home without a feeding tube or the need for oxygen. He basically sailed through the process like a rock star! A true miracle if you ask me! I was a nervous wreck bringing him home. I could not believe that this tiny baby who was hooked up to all these machines and wires was going home with me. Grayson had occupational and speech therapy when he was around 2. He also had 2 subsequent minor surgeries: one for an incisional hernia repair and one for an epigastric hernia. He is now 16 years old, a gifted student (with straight A's!) and a gaming enthusiast! He is the apple of my eye and completed our family of 5. We are so grateful he is now healthy and happy. He has seasonal allergies and occasional reflux that started about a year ago and I still worry about him more than what's probably typical, but that comes with the territory after all we have been through.
I admit I baby him. I know I shouldn't, but I do. My husband gets on me about that. Whenever he gets a stomach virus, a cold, or a cough, my mind always wanders and thinks the worst. I do believe I have a form of PTSD. No matter how well he's doing now, the trauma and worry I felt long ago never really fades from my memory. I know I breezed through the story and I do not want to discount what we went through because it was tough, especially in the early days. It was filled with constant worry, many follow-up appointments, and many precautionary measures. But I am thankful that Grayson's course was a relatively easy one compared to others. I cannot begin to explain my gratitude to Dr. Kays, Joy, and the CDH team. I will forever be in their debt. He is more than just thriving; the possibilities are limitless for him!