World Down Syndrome Day is March 21st, or 3/21. Down Syndrome is also known as Trisomy 21, as it is characterized by an extra (third) chromosome on the 21st chromosomal pair.
Every year, 6,000 babies are born in the United States with a Down Syndrome diagnosis. Often, people’s first reaction to a baby with Down Syndrome is to apologize to the parents of the baby. In some cases, the parents are disappointed. They could have been expecting a biotypical baby, one that resembled their own genetic makeup. Still, parents of children with DS are overwhelmingly positive about their experience. In fact, the most negative aspect of the whole situation is the judgment their child receives from other people. Today is World Down Syndrome Day; its goal is to raise awareness about what it means to have DS. In that spirit, this is what parents of children with DS wish the rest of us understood.
My Baby Is Not Broken
Many parents of children with DS notice others treat their child as though they are broken or deficient. One of the ways families might cope with a Down Syndrome diagnosis is to reframe the entire discussion. Rather than focusing on the ways their child is not the same as others, they see their child as a whole being. Every child, with or without DS, has that special something that makes them truly unique. And, of course, their parents love that special something lots and lots!
My Baby Is Diagnosed With Down Syndrome
There’s a difference between using the full term Down Syndrome vs “Downs”. Saying someone “has Downs” is inappropriate.
Down Syndrome Does Not Mean Someone Is Always Happy
Some people think that those with Down Syndrome have a naturally happy temperament. Not true, according to their parents. Just because someone has DS does not mean they are naturally a more cheerful person. They are just as stubborn and strong-willed as anyone else.
Down Syndrome Is Not A Death Sentence
In the first half of the 19th century, a person with Down Syndrome had a significantly shortened life expectancy. While some children born with DS do have a shorter life expectancy, most can expect to live well into their 60s! It’s true; DS can often coincide with other medical conditions like a congenital heart defect.
DS Families Lead Fulfilling Lives
When given the possibility, those with DS can become contributing members of society. Not only can those with DS lead rich, full lives, so can their families! DS mothers fare better than moms of those with other congenital disorders. They have lower levels of stress and generally find more effective support networks available for them. Perhaps this is, in part, because DS is the most common congenital disorder. Since more families are impacted by DS, they are able to provide quantifiably more support for those with experience.
Kids With Down Syndrome Understand What We Say
Most importantly: people with Down Syndrome understand what others say and do. While DS often involves a minor intellectual impairment, the effects are just that - minor. Those with Down Syndrome are more capable than some give them credit for.
About one in 700 American newborns are diagnosed with Down Syndrome. Honor their unique and precious lives by learning more about what having DS means for that one baby in 700.