Part 2: Learning about Down syndrome

Yesterday we met the Kibbe family - Mary, Justin, and their sons Rex and Riley. Riley is 3-years-old and has Down syndrome. Today we’ll find out more about what Down Syndrome is, some of the resources the Kibbes have found useful, and what services are offered in Billings.

Facts about Down syndrome - The following is information from the National Down Syndrome Society website:

Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

• One in every 733 babies is born with Down syndrome, making it the most commonly occurring chromosomal condition.
• The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.
• People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
• A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
• The additional copy of the 21st chromosome which causes Down syndrome can originate from either the father or the mother. Approximately 5% of the cases have been traced to the father.

Above there was a mention of the ‘increased risk for certain medical conditions,’ Riley is fortunate in that he has had minimal health issues. At birth Riley had a PDA - a valve in his heart that didn’t shut at birth, but it closed on its own so no surgery was necessary. He also had syndactyly (fused) fingers, but because they were “simple and only engaged the soft tissue, they were separated and he now has full use of them.” He received his surgery through the Shriner’s Hospital when he was 18 months old. When he was 9 months old tubes were put in his ears, as he had fluid on his ears. Riley has very small anatomy, which doesn’t allow his ears and nose to drain very well. Mary noted they immediately saw a change in Riley following the tube placement - he went from near silence to constantly babbling. The Kibbes also recently started Chiropractic care for both boys, which they attribute to success they’ve experienced in fighting off colds and the oft following sinus infections.

The following article will outline the resources the Kibbes have found useful in their area and some of the resources available in the Billings community.