Elijah’s Story - Congenital Diaphragmatic Hernia (CDH)

At our 20-week ultrasound, we learn that our little boy had left-side CDH. In the middle of a pandemic, we started looking for a hospital that specializes in CDH. We found Cincinnati Children’s Hospital and relocated to Cincinnati at the beginning of July. On the morning of July 28th, 2020, we were induced at Cincinnati Children’s Hospital. We ended up going into an emergency C-section around 9 pm that night. At 10:02 pm, Elijah King England was born weighing 8lbs 2.7oz and 20.4 inches, and we will never forget the sound of his little cry. The first couple of days were spent getting his medications adjusted for his pulmonary hypertension, keeping him sedated, and monitoring his heart rate as much as possible. On day 3, after a few X-rays, they found that his replogle tube was not suctioning out the fluid in his stomach (due to it being up too high in his chest and possibly twisted). They had been unsuccessful at getting it decompressed to give his lungs more room, so they went ahead and got him on the surgery schedule for the next day. Since they believed him to be stable enough for surgery, they allowed me to hold him for the first time.

On day 4, August 1st, 2020, at around 9 am, our son was headed into his repair surgery, which was expected to last 4 hours. He came out of surgery around 11:15 am. The doctors were able to use Elijah’s abdominal muscles for his repair. At this point, doctors told us it would be at least another 4 weeks before we even begin to discuss possible discharge, but as the days went by, my boy proved them wrong. On August 3rd, he had been taken off his heart and sedation medications completely. On August 8th, he was extubated and started on nasal tubes, and his replogle tube was switched from suction to gravity. This day was also the day that his dad got to hold him for the first time.

A few days later, his replogle tube was removed, and we began working on feeds through the NG tube starting at 10 mls. On August 16th, he was taken entirely off oxygen and took 60 mls of feeds (full feed was 80 mls). On August 17th, we tried oral feeding for the time, and he took 13 mls of his feeding by mouth. Over the following week, he continued to increase the number of feeds until he got to full feeds and was taking over half of them by mouth. On August 26th, Elijah was discharged from Cincinnati Children’s Hospital with just an NG-tube. We went home to finally meet his big sister. Since being home, he has done really well. After 2 days of being home, he pulled out his NG-tube, and we haven’t needed to put it back in yet. I barely sleep and always worry but so blessed at how well he has done and is doing. None of this would be possible without the fantastic team at Cincinnati Children’s Hospital and the Tiny Hero Foundation and their donors.