22q

What We Wish “Grey’s” Knew About 22q

On the latest episode of the medical drama Grey’s Anatomy (ABC), a fetal surgeon and her surgical fellow discuss a case in which a pregnant woman has had multiple stillbirths. They attribute these stillbirths to 22q11.2 deletion syndrome, also known as DiGeorge Syndrome, and suggest that the mother should pursue adoption instead.

Unfortunately, this is a vast misrepresentation of the truth about 22q. 22q11.2 deletion syndrome is one of the most common known genetic syndromes, occurring in approximately 1 in every 2,000-4,000 births. Contrary to the television script, most of these children grow to become adults and enjoy a good quality of life.

Parents from multiple 22q family advocacy and awareness groups, such as the Dempster Family Foundation, have taken to social media with hundreds of posts and tweets after the episode to share their dissatisfaction regarding the inaccuracy and insensitivity of this information. They have flooded the internet and the Grey’s Anatomy Facebook page with pictures and stories of their own children with 22q, all very much alive and well. In fact, over the past few days since the episode aired, over 4,000 individuals have signed a petition requesting that ABC and the show retract the error.

22q11.2 deletion syndrome can cause multiple medical and developmental conditions, such as heart defects, immune dysfunction, learning disabilities and speech disorders; however, the vast majority of individuals with 22q survive and thrive. Many children with 22q need therapies and educational support services, but most go on to graduate high school and, in some cases, pursue post-secondary education. 22q does not affect all individuals equally: some children do have significant medical complications, whereas others are only mildly affected.

The bottom line is that no two children with 22q are the same. Parents deserve to know that no matter what their child’s challenges may be; they deserve respect and support to ensure they reach their full potential. The 22q Center at Nationwide Children’s Hospital provides expert interdisciplinary team care for children and adults with 22q. You can also check us out on Facebook.

To see The Grey’s Anatomy clip for yourself, go here. To request an appointment with our team, click here.

Richard Kirschner, MD
Richard E. Kirschner, MD, FACS, FAAP, has joined Nationwide Children's Hospital as chief of Plastic and Reconstructive Surgery and director of the Cleft Lip and Palate-Craniofacial Center.Dr. Kirschner is nationally recognized as a leading authority in cleft lip and palate, velopharyngeal dysfunction, 22q11.2 deletion syndrome and hemangiomas/vascular malformations. He has been widely published in many leading professional publications, is co-editor of the text Comprehensive Cleft Care, and is actively involved in research and teaching. Dr. Kirschner has taught at educational symposia in several countries and is co-founder and medical director of Casa Azul America, Inc., a non-profit organization for the delivery of cleft care to underserved children in central Mexico.
Adriane Baylis, PhD, CCC-SLP
Adriane Baylis, PhD, CCC-SLP, is a speech scientist, craniofacial speech pathologist and director of the Velopharyngeal Dysfunction Program. She is also Assistant Professor of Clinical Plastic Surgery, Speech and Hearing Science, and Pediatrics at The Ohio State University. Her clinical interests include perceptual and instrumental assessment of velopharyngeal dysfunction in children with cleft palate and other craniofacial anomalies. Her research focuses on measurement of speech outcomes in children with cleft palate and the multifactorial nature of speech disorders and velopharyngeal dysfunction in 22q11.2 deletion syndrome.

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