Charlotte’s Story - Congenital Diaphragmatic Hernia (CDH)
We first heard the words Congenital Diaphragmatic Hernia at my 21-week anatomy scan. To say we were caught off guard is an extreme understatement. The facility/hospital my OB/GYN was associated with did not have the level NICU or ped surgeons available for her care, so we were transferred to MFMs/OBGYN at another local hospital. We were devastated and turned to Google to try and learn all we could about this condition and what we could expect with our girl once she was born. My local MFMs assured me her case was mild, with only her stomach and small bowels up in the chest. Google turned us on to JHACH, and I remember sending an email to Joy and thinking, "How are we going to do this while also relocating and having no family/support in FL?" She sent me an email the next day and wanted to jump on a call. That call was the first time I honestly felt like my child had hope.
When we went to JHACH for our initial consult, I remember being there in the room alone (thanks to COVID) and finding out that her case was indeed severe, with over 30% of her liver up in her chest. We almost skipped our consult with JHACH because our local doctors had assured us it was a case they could handle. I will be forever thankful that we trusted our gut and got another opinion. Charlotte was born on June 2, 2021, with 45% of her liver in her chest, along with her stomach, spleen, colon, and small bowels. She ended up having a hernia sac that preserved some of her lung volume, which was noted to be about 35-40% of normal lung size.
She did well initially but eventually ended up maxing out the traditional vent settings and having her surgery bedside because she just wasn't stable enough to move to the OR. Charlotte took her time to finally turn a corner on her vent settings after surgery, and she was finally extubated 24 days after birth. We got to hold our girl 24 days after birth and haven't put her down since. She has also struggled with some gallbladder issues, and she had to have a gallstone removed in January of 2022. She is on medication to hopefully prevent any more from forming. After our gallstone procedure, she is a different baby and is so happy and hitting all her milestones. We can't believe she will be 1 in June! We love our little wild child and are forever thankful to Tiny Hero for their support during the hardest time of our life.
