Tell Grey’s Anatomy- No More 22q.11 Misinformation!
One of the problems with having a child with 22q.11 Deletion syndrome (a.k.a DiGeorge Syndrome, or Velocardiofacial syndrome) is that even though it is considered to be as common as Down syndrome, very few people have heard of it. This includes the professionals who encounter these individuals on a daily basis in their professional lives: doctors, nurses, special education teachers, physical therapists, occupational therapists and social workers. This lack of knowledge and recognition hinders accurate diagnosis and also hinders targeted interventions in the lives of these individuals. It is also difficult for the parents who may be searching for an explanation of their children’s problems. There are many organizations out there working diligently to disseminate correct and accurate information for both parents and professionals. Some of them include, The International 22q.11.2 Foundation http://www.22q.org/, The Velocardiofacial Syndrome Educational Foundation http://www.vcfsef.org/, and the Dempster Family Foundation www.dempsterfamilyfoundation.org. Education and increasing awareness concerning this syndrome is an uphill battle. If you are reading this, and don’t know or haven’t heard of this syndrome, take a peek at these websites. You probably know or have known people in your life who have this syndrome.
Worse though, than lack of information, is misinformation. There was a recent TV episode of Grey’s Anatomy where two doctors were reviewing patient charts. The first doctor stated, “This Mom’s been pregnant 3 times, the first two were stillborn.” The second doctor replies “Well, this one will be too. 22q11 deletion…. She should just adopt.” Here is video of the show.
That is a scary statement for a woman to hear if she just has found out she is pregnant with a 22q.11 child. It also is a very upsetting statement for the hundreds of thousands of parents raising and loving children with Deletion 22q.11.2 syndrome. It is difficult enough to try to educate medical professionals and the general public, but then to have misinformation broadcast to hundreds of thousands of viewers is unconscionable.
The Dempster Family Foundation, (started by Ryan Dempster, the former pitcher and father of a daughter with 22q.11) has started a petition to the producers of Grey’s Anatomy to issue a retraction or better yet, make a public service announcement educating the public about the deletion. I am urging all readers, not just parents of children with Deletion 22q.11 syndrome to sign the petition. It only takes a minute.