Drew “Our Sweet Warrior” with Campomelic Dysplasia

February 15, 2015

Up until our 28 week ultrasound, our sweet baby boy, Drew, had looked perfect on every ultrasound. It was at that time, however, we learned that our little guy’s femurs suddenly appeared extremely short and curved. We were referred for a higher level ultrasound and we were told that Drew had a form of skeletal dysplasia, and that they were leaning towards a rare and often fatal diagnosis – Campomelic Dysplasia.

Drew was born on December 10, 2014 and was immediately intubated. A bronchoscopy showed tracheobronchomalacia and the decision to have a tracheostomy was made. In addition to the floppiness of the airways, Drew has also been diagnosed with subglottic stenosis (narrowing of the airways), hypothyroidism, hip dysplasia, severe scoliosis, possible hearing loss, g-tube dependence, leg bones that are short and curved, and deformed bones in his lower legs and ankles that gives the impression of clubbed feet.

After a long month in the NICU, Drew is home and doing great. Before Drew’s diagnosis, we never thought we’d have such a rare “medically complex” child. Now, we can’t imagine life without our sweet little warrior.

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