Rakari's Story - Congenital Diaphragmatic Hernia (CDH)

My name is Chania Cowie-Parks, and my son’s name is Rakari Christian Harris Jr. His dad and I found out that Rakari had a right sided Congenital Diaphragmatic Hernia when I was 18 weeks pregnant. The doctors saw it at my first ultrasound appointment and they scheduled me to come back the following Monday to take another ultrasound. At my next ultrasound, they told me he had a right sided diaphragmatic hernia. His dad and I were so confused because we had NEVER heard of it. It was so overwhelming for us to find out that he has a birth defect, especially by him being our first kid. We were so confused and scared but we had faith.

During my pregnancy, I had to have a lot of ultrasounds, I had an MRI, and he had an echo of the heart while he was in my stomach. I was due November 25th, 2018. I had him November 15th, 2018 at 11:42pm because every time I had a contraction during my stress test, his heart rate would drop. After I had Rakari, he was transferred to the Children’s Hospital of Michigan DMC. November 16th, 2018, Rakari was put on ECMO. During his time on ECMO, Rakari developed a blood infection. It seemed like every other week his machine would have clots in it. The doctors told us if they had to remove Rakari from the machine before he was ready to get off, it would be a chance of him passing. But he didn’t. He’s a fighter, and he got off ECMO December 21, 2018.

From that moment forward, he was only on the ventilator. He had gotten to 50% on the ventilator then they had to go back up to 100% from him desatting. They didn’t know why. Once they ran tests on him, they discovered he had caught the pneumonia. They treated his pneumonia and started going back down on his oxygen. He eventually came off the oxygen and had a nose cannula. It was about a week before they put him on room air. They had him on and off of room air and on the nose cannula for a few days. He is finally completely off the nose cannula and is now on complete room air. They are trying to get him on the bottle before he comes home, and so far, all he is taking is 3CCs at the moment, which isn’t much, but it is a start. He also has a pneumonia in his right lung and they are treating his pneumonia for two weeks. The plan is for him to be home by the first week of March!