I was curious about this site, and was describing DiGeorge's syndrome to someone. Here is an article that may help understand the condition more. I found out that my husband had the disordered shortly after we found out I was pregnant with Makenzie. We had just gotten married and he ended up in the hospital. I knew he had heart surgery as a child, but I did not know at the time he had a genetic defect. We were told that there was a 50% chance of any child we had having the condition. That did not deter us. My oldest is from a previous relationship. Our two that we have together are perfectly healthy. I just learned a few weeks ago that our newest addition may have the disorder. They found two heart defects, an interrupted aortic arch and a large hole, or VSD as they called it. I am due three days before Christmas. Our new addition is now being monitored very carefully, and we are delivering at the University of Michigan Hospital in Ann Arbor, in order to prepare him for surgery immediately following his birth. There are a lot of other unseen issues that may go along with the disorder, including clef palate or lip (neither are present at this time), mental retardation, feeding issues, immune problems, calcium problems, learning difficulties, and problems with the kidneys. I am more concerned how my other three; 5, 2, and 1, will handle mommy having to divide her time between them at home and their brother in the hospital, especially considering it is Christmas. As you can tell, I don't have a lot of other outlets for my concerns.
You and your husband are brave - not everyone can find the power to become parents knowing that your kids may have the same disorder... It seems you are loving and caring family. So think your kids will understand - your older can understand and may be helps you with younger ones.
My step-sister has 7 years old daughter and few month ago she gave birth to twins - one of the newborn girls had bowels problems and needed the surgery. This newborn girl has been operated in the other hospital - my sister was far from her at this time...She has to be in lying-in hospital with other newborn + the oldest daughter at home...
Now everything is already fine with both of the twins - and my sister is the happiest mom. She says: "It was really difficult - but I has not think about it while it was happening, I just did what I have to. And all troubles has gone)."