Our Kyle

We have some very special news to share with you about our new baby, Kyle. He was born with Down syndrome. He is incredibly healthy and strong and only exhibits a few of the physical manifestations so far.

Since one of the main concerns of babies with Down syndrome is heart abnormalities the hospital ordered an echo-cardiogram even though no murmur could be heard and his coloring was very good. It revealed a small Ventricular Septum Defect, or a small hole between the lower two chambers of his heart and a malformation of the right valve. We will learn more about what exactly is going on with the valve when we have a follow up echo-cardiogram with his pediatric cardiologist in a few weeks. Otherwise neither is posing any kind of immediate health risk. The VSD might close up on its own, continue with no noticeable side effects or will possibly need surgery sometime in the future.

We are also being referred to do genetic counseling which will tell us what kind of Down syndrome Kyle has. This will help us better prepare for the future, giving us an idea of what to expect as he grows up. Lastly, he will be starting therapy through the Arizona Early Intervention Program for Infants and Toddlers.

We are very proud of our little boy and feel that he is a special blessing in our home. Right now, just like any other newborn, we are dealing with the exhaustion that comes from 2 am feedings, trying to establish a regular family routine, and the reality of getting two babies in and out of car seats wherever we go anywhere with all their accompanied paraphernalia. What he needs now is the same love, attention, and care that any other newborn needs.

The correct name of his diagnosis is Down syndrome. He is first and foremost Kyle, our baby, secondly he is "a baby with Down syndrome." It is not appropriate to refer to him as "a Downs" or "a Downs baby". Terms of sympathy are not appropriate. We welcome any questions you have about his diagnosis but want you to understand that we see him as our Kyle, our perfect new baby, and will rarely, if ever, refer to him being our baby with Down syndrome in general conversation and would appreciate it if you also referred to him as Kyle, not as his diagnosis. We will provide updates on his heart condition as we receive them and we will applaud his accomplishments just like we applaud the accomplishments of our other children.