Cayan's Story - Congenital Diaphragmatic Hernia (CDH)

Cayan was born with a CDH, cranial synostosis, Pierre Rubin syndrome, pulmonary hypertension, pulmonary hypoplasia, and more. The doctors said there was only a 20% survival rate. Cay surpassed all odds. He made it through 23 surgeries (most of which were minor procedures but risky nonetheless). The major operations were CDH repair, Cranial Synostosis repair, sub-mandibular jaw distraction, and a tracheostomy.

Cay was in the NICU for 9 months and at a pediatric rehabilitation center for 6 months. He was on a ventilator until he was 3 1/2. He had a trach and feeding tube until age 4.

The first few years were incredibly difficult. There were times when the doctors didn’t think he would make it. There were times when hope faded as his condition worsened. Through every major surgery, there were a great deal of risks. Cay was strong. He was a fighter. He overcame many obstacles.

Cay is now 14. He climbs trees, hikes, plays soccer with friends, and really enjoys art. Cay functions normally. For years, he got really sick with frequent respiratory infections and pneumonia but now he is doing much better. He has been weaned off of medications in the last few years other than occasional albuterol during shortness of breath or sickness. Cay’s medical team was amazing and I am very grateful for the love and care he received at St.Johns and Ranken Jordan.