Cri du chat... Part 2

We didn't know before my son was born that he had a genetic disorder. During the standard ultrasound at 20 weeks, during his mom's pregnancy, we were treated to an awkward moment when the technician determined that Gideon had a cleft lip and possibly palette. After waiting about 30 minutes in the room alone, the tech came back and sent us home and let us know that the doctor would be calling us in a day or two. It wasn't until the call from the doctor that we learned of the cleft lip.

The next 20 weeks were spent learning about what we could expect for our son, preparing physically, mentally and emotionally for the birth of our son. I don't remember the specifics of how I was feeling, but I do remember wondering what my reaction would be. When he was born all of my worries were pushed aside as I found that I had nothing but love and a deep desire to protect this beautiful baby boy.

Gideon was only 5 lbs when he was born and the cranio-facial team doesn't like to perform any corrective surgeries until the child is at least 10 lbs. It took Gideon 3 months to gain the weight and then he was finally ready for his first surgery.

The day finally came. We got up early to go to the hospital, full of nerves and worry. It was the admitting nurse that first recognized several things. She came in to the room where they got all of Gideon's vitals and had us change him into a hospital gown. She couldn't really tell us what she suspected, but she felt that she should let us know since she was also going to talk to the anesthesiologist. Based on Gideon's cat like cry, facial features, among a few other things, she thought that our son had a rare genetic disorder called Cri Du Chat Syndrome.

In that moment, our nerves and worries were expanded at least a hundred fold and now we added to that question upon question. As soon as our little baby was taken by the hospital staff for his surgery my wife ran up to the computer area setup for families of children in the hospital to research this syndrome that neither of us had ever heard of before. 

I handled the revelation in my own way. I hid from it at first by watching a movie while I waited for the nearly 2 hour surgery to be completed. In the back of my mind I knew that what the nurse had told us was the truth, but there was no reason for me to be that concerned with it at that moment. There were enough other things to fill my mind with worry. I would sort out these new feelings when I had time for them. When my wife showed me the results of her research, it only confirmed what the nurse had said. Images of other children with Cri du Chat looked extremely similar to our son.