Cora's CDH Story - RCDH - Undiagnosed

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 6lbs 1oz. 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 didn't see a reason why so I didn't go. I think the tech saw something, but we all brushed it off.

 

Cora CDH survivor

Cora was due on 2/23/17, but I elected to be induced the night of 2/20. Labor with Cora was quick and easy! She was born at 2:09pm on 2/21/17, weighing 6lbs 13oz and she was 18.5" long. She was pink and beautiful and completely healthy, and she had no difficulty breathing.

 

Her 1 month appointment on 3/21/17 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 about 5:30am to eat. She fell back asleep as normal, but woke up again around 6:45-7am. 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 she was spitting up a lot more than she ever had. I was afraid 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 11am, I explained what was going on and asked him to go 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, and that is when I decided to go ahead and take her to the local emergency room.

 

Cora CDH survivor

During triage, the nurse pointed out that her breathing was labored. Once we got back to a room, they did a chest x-ray, RSV test, flu test, and after several attempts, 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 it appeared that some of her intestines were 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 done, then 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 for 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 2 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 was going to set aside time in the operating room on Monday, March 27 for Cora. Cora was on IV nutrition, fluids, Vapotherm, and she had her NG tube & PICC line already.

 

Cora CDH survivor

On Monday, March 27, Cora had her hernia repair. Leading up to the surgery, we were told they weren't sure if they were going to 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 12pm, but her surgery was pushed back to 4pm 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. She did really well. Her lung had developed normally, and the hole in her diaphragm was on the right side & 3cm by 4cm. 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 gave up her oxygen and pain medicine and we were discharged on Friday, March 31.