Savannah’s CDH Story
When I was 20 weeks pregnant, we discovered our little girl had CDH. Immediately after, I started researching and joined some Facebook groups. We heard Dr. Kays and his team have the most experience with CDH, so we made an appointment with them immediately. We flew to Florida shortly after that, and honestly, my anxiety was through the roof! On top of the CDH-related anxiety, I hate heights (even in an airplane), and this was our first time away from our other kids. After meeting with Dr. Kays, we felt very confident with them since we were given a higher survival rate than our local hospital gave us. Dr. Kays wanted us out there as soon as possible, so my mom, our two sons, and I were going to fly out there, and my husband would have joined us a few days later. Well, my water broke about 3 am on Easter Sunday, so we had no choice but to go to the Women's Prentice in Chicago. We were going back and forth with the Chicago Prentice team, trying to get discharged so Dr. Kays could get a medical jet to pick us up. It didn't work because they broke my water and performed an emergency C-section.
On April 20th, Savannah was born at 6 pounds and 5 ounces. They immediately intubated her and put her on ECMO for two weeks, with her first repair surgery at 3 days old. She had severe pulmonary hypertension, some brain bleeding, and a seizure while on ECMO, and they tried to extubate her twice without success. She was about 8 months old when my husband and I told her team we wanted her to get a tracheostomy. I researched tracheostomies as much as possible and talked to parents with trach babies before we came to this decision. Obviously, it was not our first choice, but we did not want her to endure any more damage while being on the ventilator for so long, constantly being sedated, and needing pain medicines around the clock. We knew the best thing was to get the trach so she could start weaning off meds and begin PT, OT, and speech. Savannah Grace needed to start living a life free of the ventilator that held her back!
It was the best decision for her! Now she can smile, move around, and play — she loves having us hold her more often. She loves life and people. She is always happy and smiling at anyone that comes to visit her. Her curiosity for things outside her room is precious — she will lie there and smile at anyone outside her room. Savannah Grace loves playing with toys, looking around, and having books read to her by Dr. Shabaan, and she always crosses her legs like a lady, even when we change her trach ties. Savannah had 7 surgeries, and luckily, her pulmonary hypertension is borderline now. We celebrated her first birthday on April 20th, and she is about to graduate from NICU this week as we are waiting for a bed at Almost Home Kids. Then after that, she will be home with her family for the first time. We cannot wait to have our whole family home under one roof!
