Baby Hazel's Journey: Living with Moebius Syndrome and Hydrocephalus

Hazel's Diagnosis and Initial Challenges

• 👶 Hazel was born with a rare condition called Moebius Syndrome, which affects her facial nerves, preventing her from smiling, frowning, or closing her eyes.
• ⚠️ During pregnancy, Victoria learned Hazel had hydrocephalus, a condition involving excessive cerebrospinal fluid buildup in the brain, initially leading to fears of severe developmental issues.
• 💔 Victoria was presented with the option to terminate the pregnancy due to the severity of the initial diagnosis, a decision that caused immense emotional distress.

Understanding Moebius Syndrome

• 🧠 Moebius Syndrome affects approximately 2 to 20 in 1 million babies, impacting the sixth and seventh cranial nerves.
• 👁️ In Hazel's case, the sixth nerve appears to be missing, affecting her ability to move her eyes left/right and close them, while the seventh nerve is damaged, limiting facial expressions.
• 🗣️ Despite the challenges, Hazel can giggle, and her parents interpret her eye movements to understand her comfort or distress.

Medical Management and Care

• 🏥 Hazel requires a G-tube due to swallowing difficulties and a tendency to gulp air, leading to venting issues and potential asphyxiation.
• 🩺 Her care involves managing eye health to preserve vision, ensuring adequate nutrition, and ongoing neurosurgery for hydrocephalus, including programmable shunts.
• 🤕 The family is also exploring head reshaping with a helmet, pending clearance from the neurosurgeon, to address head shape deformities caused by hydrocephalus.

Parental Resilience and Perspective

• ❤️ Victoria, a mother of five, draws on past experiences with her autistic twins and son, and her adopted half-sister with ADHD, to navigate Hazel's care.
• 🌱 She emphasizes a mother's love and the importance of adapting and educating oneself to provide the best care for her children, regardless of the challenges.
• 💖 Despite the difficulties, Victoria affirms that Hazel is perfect and her love for her children is paramount.

Community Support

• 🤝 A GoFundMe has been established to help the family cover Hazel's extensive medical expenses.