Lurie Children’s 22q Deletion Center was the first of its kind in Illinois – the first multidisciplinary group of pediatric experts dedicated to providing comprehensive care for individuals with this condition. Their first patient was born in 1965. Their multidisciplinary clinic at Lurie Children’s began in the early 2000s.

­­­­­­­­­­­­­­­­­­­The 22q Deletion Program at Lurie Children’s provides proactive, comprehensive, and holistic care for infants, children, and adolescents with 22q11.2 Deletion Syndrome with the goal of achieving the best quality of life for the patient and family in a manner consistent with their values. Such comprehensive care requires a multidisciplinary approach. Their team visit day includes core expertise in genetics, immunology, otolaryngology, speech language pathology, audiology, and social work.  Our team also includes cardiology and endocrinology.  About 60 team visits are arranged each year and we follow additional patients outside of the team structure. Comprehensive care of patients at Lurie Children’s extends to cardiothoracic surgery, radiology, general surgery, urology, plastic surgery, developmental pediatrics, anesthesiology, and other fields as the phenotypes for these patients varies widely. 

They are committed to research and quality improvement.  Members of the team have published articles specifically as it relates to 22q Deletion Syndrome on topics pertaining to congenital heart disease, diagnosis and surgical treatment of velopharyngeal insufficiency, platelet function, and more.  Members of the team have lectured on an array of related topics at the local and national levels.

They have served over 400 patients in the last 10 years.  Many patients with 22q11.2 Deletion Syndrome are seen at Lurie Children’s outside of the multidisciplinary team setting as well. Patients at Lurie Children’s are able to see multiple providers from across multiple specialties all in one day. The program links the experience and expertise from several pediatric subspecialty areas including immunology, otolaryngology (Ear, Nose & Throat Surgery - ENT), speech & language pathology, audiology, genetics, cardiology, endocrinology, and social work.

Link to this Lurie Children’s 22q patient story: https://www.luriechildrens.org/en/blog/22q-made-our-family-stronger-lilas-journey-with-22q-deletion-syndrome/