Charlotte’s CDH Story
December 2, 2021 — a date I will remember for the rest of my life. We went in for our 20-week anatomy scan full of excitement and joy. This was our second baby, and we remembered how special our anatomy scan was with our first daughter. We had no idea that that day would change our lives forever. We sat in awkward silence through most of the scan until our ultrasound technician told us she had to ask the doctor a question. They returned together as the doctor told us our daughter had a left-sided diaphragmatic hernia. He went over all our “options” and how traumatic this diagnosis was and then went on to say we may have to transfer to Cincinnati. He went ahead and measured her LHR and gave us the typical 50-60% survival rate number. I was shocked, scared, and angry. I went home and just stared at our oldest daughter, wondering how I could possibly ever leave her for an extended period. We spent the next few months going to so many ultrasounds and appointments at Vanderbilt. Each one left me with more nerves and a lot more anxiety, even though Vanderbilt took such great care of us. We played back and forth with the idea of relocating. Still, I constantly felt a sense of peace about being in our home city close to all our family, so we put all our trust in Vanderbilt Children’s Hospital and we have never regretted that decision.
On April 9, 2022, our sweet warrior baby was born in quite a dramatic fashion by emergency C-section. Charlotte did remarkably well and ended up not needing ECMO. She stayed stable those first few days, so they decided to do surgery on her 4th day of life and remained stable throughout the surgery. Her stomach, bowels, and 20% of her liver were up. She was also a rare case — she had a hernia sac that slightly protected her lungs. Charlotte spent one week on the oscillator vent and just a few days on the conventional vent before moving to CPAP and then vapotherm. After three weeks, she was finally on room air! However, our biggest hurdle came with feeding. She had a hard time with an oral aversion due to severe reflux and puking. She struggled to gain weight and take off with the bottle. After working for a month on feeding, we decided it was the best idea to get a G-tube so our family could finally be all home together. She struggled to get back to full feeds after her surgery and I remember questioning if we had made the right decision. But finally, after 68 days in the NICU, our sweet miracle came home! We could not have been more thrilled with our experience at Vanderbilt. They made us feel like family and loved our girl so much. Charlotte is now ten months old, developmentally right on track and eating completely orally. She is still small, but that doesn’t stop her from doing anything! This journey is so hard, but these babies are strong and worth the fight!
