Kyson’s Story - Congenital Diaphragmatic Hernia (CDH)

At our 24 week ultrasound, our OB/GYN thought they saw something - originally, they thought it was a possible cyst in the abdomen. They sent us to a high-risk doctor (MFM) to get better pictures. We went to Columbia, where they did an extensive ultrasound and checked EVERYTHING. When the doctor finally came in, he gave us some devastating news.

First, he confirmed Kyson had a single umbilical artery (SUA) which we had known from previous scans with our OB. He then told us that our little man did not have a cyst but a Congenital Diaphragmatic Hernia (CDH). We had no idea what this was prior to this appointment, so this began a long journey of figuring out exactly what this meant and how we were going to proceed.

I was then told that I had to choose a hospital that was better equipped for my little CDH warrior. We chose Children's Mercy Hospital in Kansas City, Missouri. A 3.5-hour drive for us. Not ideal, but not impossible. At our first appointment in Kansas City, they did an MRI, which showed his stomach, intestines, and spleen were in his chest.

They told us that our little man's CDH was not classified as severe, thank goodness! Kyson's left lung was significantly smaller due to being squished by other organs, but his right lung looked pretty good considering the circumstances. They seemed fairly positive that the outcome would be okay, and we left feeling a little hopeful and relieved. Of course, they wanted us to know that anything could happen and that they really do not know for sure what the outcome would be.

I was told I would have to relocate at 38 weeks and be induced at 39 weeks. Little did we know, Kyson had other plans!

At 36 weeks, my water broke... Thank goodness we had already relocated a little earlier due to signs of preterm labor, so we were already in Kansas City. On September 13th, at 11:25 pm, Kyson made his appearance. He was easily intubated and whisked away to the NICU.

Kyson had his repair surgery at 2 days old and did great! When they went in, they found a "hernia sac" around the organs that had moved up and the hole in his diaphragm was small enough that it did not need a patch. They were able to use a muscle flap. These are all things we did not know before surgery, but we were very grateful to learn.

Two days later, Kyson was extubated and put on high-flow oxygen. We started oral feeds, which started off a little rough. He needed an NG tube, but he soon figured it out and took off, luckily. By two weeks old, he was taking full bottles orally and had been successfully weaned off oxygen. We are so lucky we got to take him home after being in the NICU for only 16 days!

Kyson is thriving at home. We are so blessed and thankful for our little miracle! I cannot thank Children's Mercy in Kansas City enough and all the wonderful people there who worked with Kyson, my tiny hero!

CDH is a scary diagnosis, but these little warriors are such strong fighters! Have faith in your Tiny Hero - they can accomplish anything!