Caleb's Story - Congenital Diaphragmatic Hernia (CDH)

This was our first pregnancy and we could hardly wait to find out if we were going to have a boy or girl! Unfortunately our enthusiasm quickly faded on the day of our 20 week anatomy ultrasound. After receiving the news that we were having a boy, we were devastated by the words: Congenital Diaphragmatic Hernia. The MD explained his condition and the seriousness of his medical state, and ultimately recommended aborting our pregnancy. After spending hours trying to figure out how to tell our friends and family, avoiding a series of phone calls, we turned to the internet. We found Dr. Kays online and contacted his office immediately. We live in Greer, SC and took the road trip to Gainesville, FL where Dr. Kays was practicing. We met with him and his team and set up a game plan. At 34 weeks, Caleb was born premature via emergency c-section. He was intubated right away and stabilized under the watchful eye of Dr. Kays.

Our miracle underwent his repair at 5 days old and spent a total of 30 days in NICU. He came home on oxygen and struggled with feeding. He was found to have many allergies, and significant GERD, which caused him to develop an aversion to eating. After working through those issues, we struggled with poor weight gain. Caleb now has reactive airway disease, which we treat with an inhaler or nebulizer. He’s 6 years old, has a blue belt in taekwondo, and enjoys swimming, singing and reading. We’ve lost count of the number of people that say there’s something special about him… but we know there is. He’s a CDH survivor.