Cora's Story - Congenital Diaphragmatic Hernia (CDH)

Cora was an undiagnosed case of CDH. My pregnancy was planned and normal, nothing uneventful. My anatomy scan was completely clear, along with my quad screen. When I was 35 weeks pregnant, I had my last ultrasound. They were estimating her to be about 6 pounds 1 ounce. The next day, I had my 35-week appointment with my OB, and he mentioned that the ultrasound tech had requested additional scans. He was unsure as to why because he said she looked good and my fluid levels were great. My doctor told me that I could go for a second screening if I felt like I needed to, but he did not see a reason why so I didn't go. I think the tech saw something, but we all brushed it off.

Cora was due on February 23, 2017, but I elected to be induced the night of February 20th. Labor with Cora was quick and easy! She was born at 2:09 pm on February 21st, weighing 6 pounds 13 ounces and 18.5 inches long. She was pink and beautiful! She seemed completely healthy and had no difficulty breathing.  

Her 1-month appointment on March 21st went great. She was gaining weight and was developmentally perfect. We scheduled another appointment when we left for 2 months.  

Saturday, March 25, 2017, Cora woke up at about 5:30 am to eat. She fell back to sleep as usual but woke up again around 6:45-7 am. She acted as though she was gassy, which wasn't really unusual for her since she was formula fed. I administered gripe water, bicycled her legs, and rubbed her tummy. She was inconsolable unless I was holding her. I held her for about 6 hours. She would barely eat and was spitting up a lot more than she ever had. I feared she had caught a stomach bug as my other two children were in school. My husband had worked late the night before, so when he woke up around 11 am, I explained what was happening and asked him to get some gas medicine for her. He did and came back to give it to her and hold her while I jumped in the shower. When I got out, he said she had thrown up a lot, so we decided to take her to the local emergency room.

During triage, the nurse pointed out that her breathing was labored. Once we got back to a room, they did a chest x-ray, an RSV test, and a flu test. After several attempts, they finally got an IV in since she was pretty lethargic. After an hour or so, the doctor came in and asked if she had ever had an x-ray before, and I said no. He said, "of course not; she's a healthy baby." He then told me that her lower abdomen was distended and that some of her intestines appeared in her chest. He had alerted Vanderbilt Children's Hospital about Cora and had called an ambulance to take us there. I called my husband, he left our other 2 kids with our neighbor, and he followed the ambulance to Nashville while I rode with Cora.

When we got to Vanderbilt, they placed her on oxygen. She had another x-ray, and the ER doctor explained that she had right-sided CDH. He had called a surgical consult, and that is when we met Dr. Speck. She was incredibly friendly and explained everything in simple terms to us. It was a Saturday, and Cora was stable, so her hernia was important to monitor but not emergent. We were told her surgery would likely be on Tuesday. We were admitted to the ICU at that time.  

Sunday, March 26, Cora had an ECG on her heart to check for deformities. The tech told us that her heart was shifted due to the intestines in her chest and that there were two tiny holes, but they were ventricle to ventricle, so they were not concerned. She also had a CT scan and was then switched to Vapotherm from oxygen. She had her NG tube inserted that day as well. Dr. Speck came by and said that she would set aside time in the operating room on Monday, March 27, for Cora. Cora was on IV nutrition, fluids, Vapotherm, and had her NG tube & PICC line already.

On Monday, March 27, Cora had her hernia repair. Leading up to the surgery, we were told they weren't sure if they would be able to do the repair laparoscopically or not, but they would keep us updated throughout the surgery. We were told to expect at least 3 hours in the OR. Cora was intubated and sedated at 12 pm, but her surgery was postponed to 4 pm due to an emergency, so we were allowed to stay with her until the anesthesia team took her down. Her surgery was about 90 minutes, and she did really well. Her lung had developed normally, and the hole in her diaphragm was on the right side, measuring 3 centimeters by 4 centimeters. Her liver had been pushed to the side, and only her small intestine had herniated. Dr. Speck was able to close the hole with only 4 stitches. She has 3 incisions and one in her belly button. That night she stayed in the ICU since she was intubated, but the next morning she was moved to a regular room. We went back and forth on oxygen that week, but eventually, Cora was able to come off oxygen and pain medicine, and we were discharged on Friday, March 31.

2022 update
I am so happy to say that she is doing amazing! Cora is a few months away from being six years old. She is in kindergarten now, learning to read, and she is so smart and funny!

Cora has not had any bad scans since the first post-operation X-ray. We are fortunate and so blessed that our girl is so special.