Amber Simone Chinn is a 19-year-old student at SUNY Buffalo who was born with a disorder that doctors said would leave her unable to breathe on her own or speak. Now, not only is she talking, she’s singing. In fact, when Amber was at a graduation party, she never thought an impromptu video recording of her singing would go viral. It did.
Amber was born with Left Craniosynostosis, a birth defect in which one or more of the joints between the bones of a baby’s skull close prematurely, before a baby’s brain is fully formed. A baby’s skull has seven bones. Normally, these bones don’t fuse until around age 2, giving your baby’s brain time to grow. Joints called cranial sutures, made of strong, fibrous tissue, hold these bones together. In the front of your baby’s skull, the sutures intersect in the large soft spot (fontanel) on the top of your baby’s head. Normally, the sutures remain flexible until the bones fuse.
Signs of Craniosynostosis include:
- A misshapen skull, with the shape depending on which of the cranial sutures are affected
- An abnormal feeling or disappearing “soft spot” (fontanel) on your baby’s skull
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