Charlotte’s Story - Congenital Diaphragmatic Hernia

We found out at our eighteen-week ultrasound that our sweet girl was diagnosed with a left-sided Congenital Diaphragmatic Hernia (CDH). I thought to myself, "there's no way. It's just a mistake, and this isn't something that WE would have to deal with, not OUR baby. Definitely a misread." But, in fact, it wasn't a misread or a mistake. It was real, and it was happening to us. I transferred my care to the University of Michigan and got my MRI done, and Charlotte had her stomach, small intestines, spleen, and left lobe of her liver in her chest, and total lung volume was 13.1 with an O/E of 29%. My pregnancy went on as normal, and I felt great.

I finally decided I wanted to be induced at 40+3. I was feeling large and in charge. I delivered Charlotte at 40+4 on November 15th, 2022, at 6:51 am. She was intubated immediately and taken to Mott's Children's Hospital NICU. Her care team talked about ECMO in the first 24-48 hours of her life because they thought her pulmonary hypertension was pretty bad. Ultimately, they decided she didn't need it, considering she took a turn for the better and was doing fine on the two ventilators she was on. For the first week, her doctors worked on getting her off the jet ventilator she was on so that she could be on just the conventional ventilator.

I finally got to hold her on November 22nd, the day before her surgery, it had been a week since she was born, and I only held her for a split second while my husband cut her umbilical cord after delivery.

She had her repair on November 23rd and needed a Gortex patch because her defect was quite large. Pediatric cardiology did two ECHOs while we were there, and her pulmonary hypertension had basically resolved itself, and they said she wouldn't need any medications to manage it. She was extubated on November 27th and put on CPAP. We switched over to high flow on December 13th and got off of versed and morphine on December 18th. They switched to full NG belly feedings the same day. She was on room air on December 21st.

Charlotte came home on December 29th with an NG tube and no medications except Pepcid and vitamin D. Within a week of being home, the pediatrician gave us permission to take out the NG tube when we are ready since Charlotte was taking a bottle and breastfeeding just fine. For now, she’s still on her NG tube, but she switched to gravity feedings. We’re working our way toward getting it out in the next two to three weeks, hopefully. I just need her to take her full bottle by mouth and keep gaining good weight.

Our sweet girl is absolutely a Tiny Hero, and I hope that she continues to beat everything thrown at her.