Shelly, these studies/research is ongoing. I had the chance to hear both the reseearchers (I have them listed below) at last year's CHERUBS conference in July. Very interesting what they presented and the work they are doing trying to identify if genes play a role in CDH. Both researchers will mail you the info. and you mail back all the samples and paperwork and it is free to participate. I didn't know you had another grandbaby with CDH. Has your family ever done any genetic counseling? I would love to have our family done, but just haven't done it.

Both Meaghan and Daryl are super nice individuals, here is there contact info.:

Identifying Genes Which Cause CDH
Massachusetts General Hospital
Boston, Massachussetts
Drs. Patricia Donahoe and Lewis Holmes
Contact: Meaghan Russell, Clinical Coordinator, at (617) 726-0828
mrussell@partners.org

Identifying Genes Which Cause CDH
Baylor College of Medicine
Daryl Scott, M.D., Ph.D.
Department of Molecular and Human Genetics
Baylor College of Medicine
One Baylor Plaza, MS BCM225
Houston, TX, 77030, U.S.A
Phone: 713-203-7242
E-mail: dscott@bcm.edu