"Gifted student and gaming enthusiast" - Grayson's Story
Our CDH story starts out at my 19 week ultrasound. I had been seeing a Neonatologist as a precaution because my last pregnancy ended quite devastingly at 22 weeks due to twin to twin transfusion syndrome. They were twin boys & 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 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 we & our baby would have to face with a CDH diagnosis.
The next few weeks & months of pregnancy would be filled with worry & uncertainty. Many doctors visits, specialists, amniocentesis, etc. I didn't get to enjoy my pregnancy like most pregnant women do. No registry, for I was uncertain my baby would even survive. Didn't help matters when one doctor suggested termination. We began doing online research to educate ourselves & we came across Dr. David Kays in Gainesville, Fl. Called right away for an appt & were seen relatively quickly. After out first appt, 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 & stayed with a family member that happened to live there. A true blessing. I left my other two children in the care of my husband & family members during this transition. 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 hernia, operated on at a day old & spent 30 days in the NICU. No ECMO. He came home without a feeding tube, without the need for oxygen. He basically sailed through the process like a rockstar! A true miracle if you ask me! I was a nervous wreck bringing him home. I couldn't believe that this tiny baby that was hooked up to all these machines & wires was going home with me. Grayson had Occupational & Speech therapy when he was around 2. Had 2 subsequent minor surgeries. One for an incisional hernia repair & one for an epigastric hernia. He's now 9 1/2 years old. He's a straight A, gifted student, a gaming enthusiast who is looking forward to going into the 5th grade! He's the apple of my eye & completed our family of 5. He is healthy & happy. He has seasonal allergies & occasional reflux that started about a year ago. We're getting the reflux checked out with an upcoming appt to Dr. Kays. I still worry about him more than what's probably typical.
I admit, I baby him. I know I shouldn't, but I do. My husband gets on to me about that. Every time he gets a stomach virus, a cold or cough, my mind always wanders & thinks the worse. I do believe I have a form of PTSD. No matter how well he's doing now, the trauma & worry I felt long ago never really fades from my memory. I know I breezed through the story & I don't 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 appts, many precautionary measures, but I'm thankful that his course was a relatively easy one compared to others. I can't begin to explain my gratitude to Dr. Kays, Joy & his CDH team. I will forever be in their debt. My son is more than just thriving, the possibilities are limitless for him!