Kaden's story
Kaden was officially diagnosed with CdLS at four months of age. He was born 18 inches, 5 lbs 14 ounces. He is now nine months old, and weighs about 11 pounds. I hadn’t even held my precious boy yet and the nurses were telling me all sorts of things about his features and their concerns. I turned to look at my mother and I could see the emotion on her face. I then looked to my husband and he was just smiling and said, “he is perfect.”
Thanks to Kaden’s mom, Rachel, for sharing his story.
They believed Noonan Syndrome (NS) was a possible diagnosis. Although he was a small baby and other features were noted, I am only 4’10” so the doctors thought maybe he is just going to take after his mommy. I learned that NS does not come up on a chromosome test so his father and I decided we wanted a consultation with the geneticist. If Kaden had a medical condition, we preferred to stay ahead of it so we could help him in every way possible. We met with the geneticist and in less than a minute of looking at him she said, “It’s not NS, but there is something there.” She told us she believed him to have Cornelia de Lange Syndrome. She did show us a few pictures of children with CdLS and I could see the similarities in the facial features.
That moment when you know your child has a disability, a flood of fear and heartbreak sets in. I was scared for my baby’s health, life and future. As parents, all we want is for our children to be healthy and live a good life. So much ran through my head at that time but I quickly made appointments with specialists and followed through with exams, X-rays, ultrasounds, EEG, etc. It was a busy few weeks but I wanted to search Facebook for a group of families with the same condition and that’s when I came across the CdLS Foundation.
I sent a message with a few questions and the next morning I had a reply from Deirdre, who answered my questions and suggested I give her a call. The next day I did just that and had over an hour conversation with her. At first, she just listened to me talk about Kaden and our experience. It felt so good to let go. I hadn’t realized I needed to talk and just say it all out loud but she must have known. Talking to someone familiar with everything going on made me feel much better. She sent me some information and recommended a few other specialists and sent me these great cards for guidance along with growth and development charts.
The Foundation has provided me with not only support and guidance, but the tools for direction. I really felt understood and in more control of the situation. On days when the worries slip into my mind, my best friend playfully tells me, “please call your friend at the Foundation because you always feel better after that.”
Kaden does have a developmental delay and continues with therapy. We take him to therapy weekly but Kaden was approved for a program called “Early Steps” that provides physical, occupational and speech therapy. A therapist comes to the house once a week for an hour and shows us what exercises to do with him daily. Besides the therapy, we are very blessed to have Kaden’s nanny, Nina, who takes care of him when we are at work. She plays a big part in his development as well, and he loves her.
Overall, Kaden is doing great and we continue to stay positive. He is such a happy baby and loves his big brother. I have my days when the unknown scares me and worries set in. Then he smiles at me and I’m reminded that the most important thing he is that he’s happy. My mother plays a big role in his life. I don’t take for granted how blessed we are to have her on this journey with us. We couldn’t imagine a life without our precious baby boy. We call him our little warrior. Although he has already been through so much and we have a long road ahead, with his daddy, older brother, uncles and cousins we think he’s going to be a pretty tough kid.
CdLS Outreach USA, published on 10 nov 2017
