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Georgia Grace Rohde
Dec 17, 2016 Latest post:
Nov 9, 2018
Updated 6/24/2017 with what we know now:
Georgia Grace Rohde was born on Wednesday, December 14th at 10:45am at Northside Hospital in Atlanta (full term, 6lbs 10oz, 20 inches long). Georgia was immediately admitted to the NICU at Northside and was then transferred to the NICU at Children's Healthcare of Atlanta for special care. After a month in the NICU, many different tests, months of specialist appointments, multiple visits to the ER, and a special trip to the Mayo Clinic, we're finally beginning to understand some of Georgia's issues.
Georgia has Moebius Syndrome. This means she was born with some missing and underdeveloped craniofacial nerves. As a result, there are several basic but important things she is unable to do, like swallowing, coughing, gagging, closing her eyes, closing her mouth, controlling her eye movements, using her vocal chords, and making facial expressions. Additionally, she has increased muscle tone (hypertonia) throughout the rest of her body that may or not be related to her Moebius. Her muscle tone makes her stiff and makes it difficult for her to coordinate her movements, hold up her head, open her hands, and relax her arms and legs. Moebius is also incredibly rare, which makes it difficult to determine the best treatments for her or what we should expect as she grows up (there are less than 2,000 estimated people in the world living with Moebius).
Georgia has many challenges, but the most immediate one we face is protecting her airway. The combination of secretions that she can't swallow, non-functioning vocal chords, and a hypertonic trunk means that it is easy for her to choke and obstruct her airway. In July, 2017 Georgia went through a tracheostomy procedure, basically receiving a prosthetic airway. She now breathes through her trach and an inflated cuff prevents secretions from her mouth and nose from draining into her airway, but this inflated cuff also prevents air from passing through the vocal cords preventing Georgia from making any vocalizations.