After a high risk pregnancy, Christian was born two minutes before his twin brother Noah on June 17, 2005. They were both born seven weeks premature, and immediately the doctors noticed a concern with Christian. He was small in size (3.5 pounds), hairy for a newborn, and he also had a heart issue called Tetralogy of Fallot.
From the start, every doctor that looked at him had an opinion on his diagnosis: Noonans, Downs, and Noonans again. He seemed to have a few traits of each syndrome but not all of them. For the ones that had a quantifiable test, the results would be negative and other diagnosis was then thrown into the mix.
I was told that a diagnosis is like a label on a shirt. It will only give you the basic information on how to take care of the shirt, but it does not tell you how much you may love wearing it or how comfortable it is. Many times the label would just irritate the neck. I cannot say we were relieved when the geneticist said she thought CdLS, but it did seem to fit. As he grew, we had the usual challenges associated with his diagnosis. [...] continue the story