Sophie was born with a TEF (tracheoesaphageal fistula) which is a hole between her trachea and esophagus. She had an initial repair as a baby and ultimately required a second repair when she was 2. The surgical team needed to place her on ECMO (heart lung bypass) to support her lungs while they did the repair. After the surgery, Sophies lungs got very sick, she had numerous complications, and the team realized she might need ECMO for a long time while her lungs recovered. The decision was made to surgically place the cannulas in Sophie’s chest so she could move around more while she recovered.
Sophie was placed on ECMO in August and the next 10 months were filled with her relearning how to sit up, play, and eventually walk around. Her physical and occupational therapists got creative and incorporated things like a play kitchen and scavenger hunts to encourage therapy. Sophie eventually got to the point where she would be running down the halls of the PICU while we had to slow her down so the ECMO machine could keep up with her. She got so much stronger and eventually was able to come off ECMO in June. In August, just barely a year later, Sophie was able to go home! She is now a thriving, curious, joyful, and opinioned 4 year old who is about to start school in the fall!
