CdLS Story – Christian

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. We would fix his heart, he was delayed in walking.

Presently, he is fed by a feeding tube, after multiple failed swallow studies. However, we maintain hope that he will eventually eat. Christian is also very vocal and his language is limited. He is just starting to say “hello” and “good bye”, and he is not shy in letting you know what he is thinking or may want. Christian’s present and future challenges are many.

However, I believe God compensated his medical issues by giving Christian a loving personality and a smile that melts hearts. Many times I would observe parents looking at him in the play area as if what he has might be contagious to them or their children. After a few smiles and attempts to sit on their laps, he would win them over. When it is time to leave, those same parents would say “good bye Christian” and many time follow it up with a hug. No other child in the play area would receive that attention – magical. He continues to be the loving smile in our lives.

Story Published On: December 23, 2010 11:11 AM