Kenzleigh's Story - Congenital Diaphragmatic Hernia (CDH)

As first-time parents at the young age of just 20 and 21, we were more than excited to be adding to our family! We found out in March of 2021 that we were pregnant. We told our families the very next day and began scheduling appointments with the OBGYN. Everything was good with the baby. The baby had a strong heartbeat and was growing wonderfully. We had our 20-week anatomy scan in July of 2021, and again, we were told the baby was developing beautifully and that our sweet baby was a girl! We were super excited and began getting everything built and ready for our sweet girl. It wasn't until the end of September, at 28 weeks, that my OB expressed concern. I went in for a routine checkup, and when he measured my stomach, he said I was measuring a bit further along than expected, and he wanted me to have an ultrasound done in 2 weeks. I had been told my whole pregnancy that she was measuring big, so we thought nothing of it. We went in for the ultrasound two weeks later, and still, nothing seemed off. The baby was moving great, and the ultrasound tech seemed normal. After the ultrasound, we were taken back to the room to wait for the doctor like usual. Though, after the ultrasound, he came in very quickly, which wasn't normal. We generally had to wait a good 10-15 minutes because he was so busy, so when he came in so abruptly and with the look he had on his face, it was alarming. He sat down and said, "Kenzleigh is suspected of having what we call fetal hydrops," and of course, we were looking at him funny because we had never heard of this. He began drawing on the paper that lines the bed to show us what the results from the ultrasound were showing. He explained that fetal hydrops is when fluids pool abnormally in the baby's body-- it can be in the abdomen, lunges, around the heart, or even in or under the skin. Immediately after explaining, he said, "I am sending you to a high-risk doctor at Community North, don't stop for anything. Go straight there!" He handed us the address, and we immediately went to the high-risk doctor, where they confirmed through another ultrasound that Kenzleigh did have fetal hydrops. 

I was admitted to my local hospital to have a fetal MRI, fetal echo, and genetic testing done. Once we finished all of the tests, we told that not only did she have non-immune fetal hydrops in her abdomen, around her skull, and had skin edema throughout her body, but also a right-sided CDH with liver and intestines up. We were then told we were meeting up with multiple teams to talk about what this would potentially mean for our daughter since we were already 30 weeks into the pregnancy. We met with the NICU team, and we were told the likely chance of our daughter surviving with hydrops and a right-sided CDH was less than 10%. We were utterly devastated and began preparing for the worst. We didn't think there was any hope until one of the nurses who had left to go home and then came back that same night just to give me the option of transferring care over to Cincinnati Children's Hospital in Ohio. She told us she was in contact with the team at that hospital and that they dealt with CDH babies all the time and were better equipped to handle her care. So that was it. We were discharged from the hospital, went home, packed our bags, and headed out the next morning to Cincinnati Children's. I was admitted to Cincinnati Children's on September 26, 2021, so they could get their own MRI, echo, and ultrasounds. We met Dr. Lim and his team, who told us we could have a shunt placed into my daughter's chest to drain the fluid out of her abdomen and that if it worked, the rest of the extra fluid would resolve by itself. 

On September 27, I went into the operating room to have a shunt placed into my daughter's chest and to have an amniocentesis done. Both the shunt placement and amniocentesis went well, and I was discharged on September 28 to stay in a hotel for the next few days in case the amniocentesis sent me into preterm labor. Luckily it didn't, but when I saw the team on September 30, they couldn't see that the shunt had begun working just yet. We decided it was best to remove more fluid from the baby's chest by inserting a 20 gauge needle into my stomach and into her, where they first removed 70mls and then another 40mls. After that, I was able to go back home and just come back every week for monitoring. When I came back on October 5, they had requested another MRI and ultrasound to check on shunt placement. Shunt placement was great, and the ultrasound revealed improvement in the hydrops. We continued monitoring every week, and the hydrops eventually resolved completely.

On October 21, I had woke up to pee, and my water had broken. I went to the local hospital as instructed and was later life-lined by ambulance to Cincinnati Children's. Kenzleigh was monitored, and I was, in fact, in labor. On October 23 at 6:52 am, Kenzleigh entered the world and began the biggest fight she would ever have. She was intubated at birth and rushed to the NICU to be stabilized. She was put on many different medications, including nitric, had two pic lines, and when she was finally stabilized, they planned for surgery at a week old, which went great. The team then attempted to extubate her at three days post-op. She failed extubation and then required a chest tube to be placed along with intubation. She was on the chest tube for 3-4 days, after which it was able to be removed, and then she was finally extubated successfully on November 6. She was put on high flow and given an NG tube. Over the next two weeks, we began to slowly wean her down on oxygen support. Once she got down to 2 liters, she could get on regular flow oxygen and attempt to bottle feed. She got put on regular flow oxygen on November 22, 2021. She began learning to feed by mouth on November 24, 2021, and did great! We still continued to wean her oxygen down, hoping she wouldn't need it to go home, but there were many bumps in our road, and she still needed half a liter to keep her stats up where they wanted them. We worked on feeds and had the NG tube removed because she was taking full feeds by mouth. We were able to be discharged from the NICU on a quarter of a liter on December 9, 2021. By the middle of January, we were completely off oxygen during the day and only used it at night. By the end of January, we were completely off oxygen. She is now a happy, healthy 5-month-old baby girl!!