Guest Post by Dr. Emily Gallagher
At Seattle Children’s Hospital we have families coming from around the Pacific Northwest for a wide array of illness, disorders, and needs. In the Craniofacial Center, children with disorders of the head and face receive ongoing care, often from birth through adolescence. These disorders are often related to birth defects or genetic syndromes. The Craniofacial Center houses a specific clinic for patients with a genetic disorder called “22q11.2-related disorder”. This is a common genetic syndrome caused by differences in the amount of DNA in this area, usually missing (deletion) or additional (duplication) genetic material. 22q is characterized by varied physical issues that may affect many different parts of the body (such as heart abnormalities, cleft palate, or speech disorders), as well as developmental delay.
In pediatrics, we often focus on the development of infants and young children with disability. However, as they age into the teen years, needs are sometimes missed. I asked a colleague for information on some of the needs she sees in her adolescent patients with developmental delay. Read full post »