Meet Theodore: 2020 Family Advocacy Week Champion

Theodore is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Theodore and his family will share information about his health journey, Nicklaus Children’s Hospital’s role in providing Theodore with necessary health care services, and why the public and our elected officials must invest in the future of kids like Theodore.

Theodore was diagnosed with hypoplastic left heart syndrome at just 2 days old. However, at 19 weeks in utero, Theodore’s parents were informed he had some abnormalities.

“We were told he only had two heart chambers rather than four,” says Michelle, Theodore’s mother. “During initial visits with the cardiologist, we were then told he had CHARGE syndrome and underwent genetic chromosome testing.”

At 3 days old, Theodore underwent heart surgery. At 4 months, a pulmonary banding procedure, extubation, and tracheal malasia. Then, when he was 6 months old, he had another open-heart surgery. From then, Theodore underwent two cleft palate repairs and pacemaker insertion.

“From that point on, our child underwent such a vast number of tests and surgeries that at times it was difficult to remember it all,” says Michelle. “What I can say is that the folks in cardiac surgery were angels.”

Today, Theodore is doing better than anticipated. He is curious, resilient, and loves to play with his mom and dad.

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