21 Things about Trisomy 21
In celebration of World Down Syndrome Day I wanted to share some facts and things our family has learned about DS since having Noah.
1. I was surprised to find that one in approximately every 700 babies in the US is born with Down syndrome. It the most frequently occurring chromosomal disorder in the world.
2. People with DS are not always happy. For some reason this is a common assumption, but it’s just a stereotype. I’ve had many people ask me if Noah is happy all the time or make a comment about how “they” are such happy people. I am always a bit perplexed by this, especially when these comments are made while Noah is in the middle of a tantrum. Ummm no, he’s not happy all the time. He’s just like any other toddler – an angel one minute and a terror the next. People with DS are all unique and have different personalities, just like the general population.
3. The medical term for Down syndrome is trisomy 21. This is because there are three copies of the 21st chromosome instead of the typical two.
4. Kids with DS are more alike their typical peers than they are different.
5. It is estimated that there are approximately 400,000 people living with DS in the United States.
6. People don’t have a “mild” or “severe” case of Down syndrome. You either have it or you don’t. Within the condition there can be a wide variety of abilities.
7. There are three types of Down syndrome: trisomy 21 or nondisjunction accounts for 95% of instances (this is what Noah has), translocation accounts for 4% and mosaicism accounts for about 1%.
8. The average life expectancy of someone with DS is 60.
9. Many individuals with DS grow up to have jobs, live independently and are active participants in their communities.
10. Almost 50% of babies with DS are born with a heart defect, many requiring surgery. We feel very blessed that Noah only had a small heart defect that closed on its own when he was 3 months old.
11. Down syndrome is named after John Langdon Down, an English physician, who was the first to fully describe the syndrome in 1866.
12. One of the biggest obstacles for children with DS is low muscle tone. It affects gross motor skills, fine motor skills, speech, and even digestion. This is why early intervention with physical, occupational, and speech therapy can help significantly. This is also why I believe that babies with DS are the best snugglers. They just melt into you in a way that typical babies don’t.
13. Studies have shown that 100% of people with DS show signs of Alzheimer’s by age 40. This statistic terrifies me! Here is an interesting NPR article that talks about some research that is being done to explore the link between DS and Alzheimer’s.
14. Cognitive ability is not determined by physical features or health issues. Sometimes I hear people say that a particular child must not “have it very badly” because they have less noticeable physical characteristics of DS. There is no correlation.
15. Babies with DS were routinely institutionalized until the 1960’s in the United States. This was just 50 years ago and today kids with Down syndrome are regularly included in typical classroom settings. How far we have come!
16. Many people with DS complete high school and some go on to a postsecondary education. An increasing number of colleges and universities have programs that are specifically designed for differently-abled students. There is one in Bellevue – perhaps Noah will go there someday!
17. 38% of Americans know someone with Down syndrome.
18. Babies with DS are not “Downs babies”. They are babies with Down syndrome (this is an example of “people-first language”). Words are powerful and the meanings we attach to them can drive social perception, attitudes and feelings. Often unintentionally, we devalue a person by labeling them with their disability first. Noah is not defined by DS, but it is a part of who he is.
19. The exact cause of the occurrence of the extra chromosome in DS is currently unknown.
20. DS is not as scary as I once thought. When I got the call that confirmed Noah’s diagnosis, I was terrified. A year and a half later I can honestly say that it doesn’t scare me anymore. The realities of the diagnosis are there, but the fear isn’t.
21. The future is bright for people with DS. Yes there are obstacles, but the possibilities are great. I don’t know what the future holds for Noah any more than I do for Landon. All I know is that right now I have a sweet, curious, determined, snuggly, loving 20 month old. I can’t wait to see the person he will become and in the meantime I will enjoy every moment with my little guy.