Layleanna’s CDH Story

One day, we were going for a normal scan around 20 weeks, our anatomy scan. We spent hours there, then got pulled to the doctor's office, saying he found something wrong. Her intestines were already developing into her chest. The doctors said they rarely get cases where the intestines are already developing into the chest and getting so large and swollen. Her doctor sent us to a specialist in Tennessee the next week. We did our high-risk scans, and it took longer than expected. We sat down with the doctor as she explained Layleanna has developed a hole in her diaphragm big enough where her stomach has went through into her chest cavity, and her heart was pushed over to the right. Layleanna developed a Right-Congenital Diaphragmatic Hernia (CDH). But that wasn't all, her heart developed a hole and was bigger with each scan. They were saying she would need open heart surgery as well. We went weekly to Vanderbilt in Nashville to get her scans weekly, on top of other scans weekly at the other specialist's office for her heart.

She was born full term, at 37 weeks and 5 days. She was on oxygen, and 3 days later, she had her surgery. They had to put a mesh patch in for her repair. Still, also something they normally never do, and had to put her intestines in a halo because her intestines were so large and expanded. They could not fit into her stomach. Hence, they had to leave her intestines outside her body in a halo. Four days passed, and the doctors were able to put her intestines into her stomach again, but they had to remove some of her intestines because there was a hole in them. She almost went septic, so she was put on medication and was very closely monitored. With her intestines being so large, her lungs were extremely underdeveloped, and she was on oxygen for 6 weeks. She had her 4th surgery to finally close her and watch how she was doing with the repair, and she was slowly weaning from her oxygen! Then, we had her cardiologist come in after her last surgery in the hospital to see her and do an ultrasound on her heart. They were saying her hole isn't closing, but she is showing signs where they can hold off on talking about a surgery for her heart. If she is showing any signs that need to be talked about or done for surgery, then we will discuss that closer to that time! Fast forward to today, having been in the NICU for 2 months, she was able to go home with no oxygen or g-tube. Today, she is 1, and we have to watch her breathing as she is developing asthma, but she is thriving so strongly.