LynnTWhen Dr. News office did our genetic testing for my husband (carrier), daughter (carrier), son (SWCAH) and myself (carrier) they quickly found MY CAH gene but was unable to find my husband’s on either my son OR husband. His type of CAH is a more rare form so they don’t test for them in the first 7 more common types.
They then continued sequencing until they found the CAH marker on BOTH of them. They even checked my daughter for it and found that she, indeed carried my husband’s strain.
We had no problems whatsoever with the lab technicians and doctors continuing to search until they found all the answers. They also tested and found out that my father is the carrier on my side of the family and my mother-in-law is the carrier on my husband’s side. This way we only had to tell the side of the family that was definately the carrier to watch out for CAH with future births along the way.
I am so sorry you had such a tough time. If you have any questions please feel free to contact me.