Pregnancy can be one of the most exciting times of a woman’s life. It can also be one of the scariest and most unexpected times. Unexpected, however, doesn’t have to mean bad.
Approximately 1 in 700 live births involves a baby with a Down syndrome diagnosis — the most common chromosomal disorder — meaning roughly 6,000 children are born with Down syndrome per year in the United States. While these numbers aren’t hidden, each prenatal chromosomal diagnosis likely feels quite shocking to the parents receiving the results.
In recent years, however, leaps and bounds have been made medically and culturally to ensure that parents of babies with Down syndrome, and their doctors, are equipped with all the necessary tools to give each baby with a Down syndrome diagnosis a beautiful and fulfilling life and to give that child’s family a boost to their happiness and fulfillment.
Recently, it was announced France’s Jerome Lejeune Foundation — a major foundation specializing in Down syndrome issues — will work with Bella Health & Wellness of Englewood, Co., to provide a specialized medical clinic for adult patients with Down syndrome. The clinic hopes to start accepting patients with Down syndrome near the end of this month and represents just one of the many resources being developed to help individuals with Down syndrome and their families navigate their unique situations.
As the United States Centers for Disease Control and Prevention reports:
The life expectancy of people with Down syndrome increased dramatically between 1960 and 2007. In 1960, on average, persons with Down syndrome lived to be about 10 years old. In 2007, on average, persons with Down syndrome lived to be about 47 years old.
Thus, during the span of 47 years, the life expectancy of people with Down syndrome has increased 37 years! This is largely credited to a decrease in institutionalization and “improved access to medical care, such as surgical intervention for congenital heart defects.” Medical feats have contributed enormously to the quality of life for these children, as has the cultural acceptance that has blossomed over the past few decades alone.
Unfortunately, in recent years, some of the same medical technology aimed to help individuals with Down syndrome has become weaponized against them. Noninvasive prenatal testing (NIPT ) is used to determine a baby’s risk for genetic abnormalities, such as Down syndrome.
Ideally, a parent would use the information gained from the test to prepare for their forthcoming bundle of joy; however, NIPT has come to be used as a test to determine one’s “worthiness.” Tragically, as of 2007 in the United States, there was a 30 percent reduction in live births of babies with Down syndrome due to elective abortion.
Across European countries, it is estimated there was a 54 percent reduction in live births of babies with Down syndrome due to elective abortion. Despite this subtle, and sometimes overt, form of discrimination, individuals with Down syndrome have plenty to say about their high quality of life.
A 2013 journal article published by the National Institute of Health examined self-perceptions of people with Down syndrome. It shattered decades-old stigmas and brought to light much-needed facts, finding “the overwhelming majority of people with DS (nearly 99 percent) are happy with their lives.” By comparison, a 2020 Gallup poll found that 90 percent of Americans were “satisfied with their personal lives.”
Happiness is not easy to come by, and individuals with Down syndrome are not simply happy, they are known for being joyful! The same NIH study showed those with Down syndrome take pride in their appearance, just like everyone else: “The overwhelming majority of people with DS like who they are (97 percent) and how they look (96 percent).” Indeed, amongst a culture that spurs many souls to struggle with self-confidence and body image, those with Down syndrome maintain a remarkably positive outlook.
All human beings thrive on relationships and connections. While each individual with Down syndrome is different, many of them are social: “the majority of people with DS feel they can easily make friends (86 percent).” These individuals also share strong bonds with their families: “The overwhelming majority of people with DS love their families (99 percent), including their brothers and sisters (97 percent).”
Perhaps the radical self-acceptance that has been exhibited by individuals with Down syndrome has led to a greater cultural embrace. Times are changing for people with Down syndrome, and thus for their parents and families as well. Down syndrome is being presented in the modern media not as a burden, embarrassment, or death sentence, but as a health condition, like any other, that can be modulated and that does not have to limit or destroy lives.
It is not uncommon for local, national, and even international networks to feature and celebrate the accomplishments of children and adults with Down syndrome. In recent years it has become common to see communities rallying around these brothers and sisters, electing them as prom kings and queens, celebrating their record athletic accomplishments, and encouraging them to reach for previously untouchable careers.
Fifty years ago, it was almost unheard of for someone with Down syndrome to be a successful lobbyist or a high fashion model, but in the 21st century, this is a new norm that is widely celebrated. Kayla McKeon is a 31-year-old lobbyist from Syracuse, New York who travels back and forth to Washington, D.C. throughout the year to lobby and champion for Down syndrome and disability rights.
Similarly, Katie Shaw is another lobbyist with Down syndrome who lobbies and writes on behalf of the Down syndrome community. When speaking to a group about her life Shaw said, “I have a busy life — just like most of you, It’s a wonderful life. I’ve made the world a better place.” Grace Strobel, another individual with a Down syndrome diagnosis, took the world by storm after becoming a mainstream fashion model and getting signed by three agencies!
Children with Down syndrome are also being featured more often in national campaigns. Wal-Mart recently featured a boy with Down syndrome in a national ad campaign that aired during Sunday Night Football. Gerber also chose to feature a baby with Down syndrome named Lucas Warren as the famous “Gerber Baby” for the first time in 2018.
The Gerber ad represents a shift in attitudes about Down syndrome because it illustrates that Gerber, a multimillion-dollar corporation, believes that featuring a baby with Down syndrome in a national campaign is a positive thing and good for business. Gerber’s CEO, Bill Partyka, relayed as much to “Today”: “Every year, we choose the baby who best exemplifies Gerber’s longstanding heritage of recognizing that every baby is a Gerber baby … This year, Lucas is the perfect fit.”
Baby Lucas’s father beamed, and said, “We’re hoping this will impact everyone — that it will shed a little bit of light on the special needs community and help more individuals with special needs be accepted and not limited … They have the potential to change the world, just like everybody else.”
Different doesn’t necessarily mean bad. Unexpected doesn’t necessarily mean bad. People with Down syndrome continue to push the limits society has placed on them, forcing the culture to keep up with their positive attitudes and record-breaking contributions. Anyone who has known one of these precious individuals will say that perhaps the most heartwarming contributions they bring to the world are their joyful spirits.
The shifts in cultural attitudes concerning Down syndrome diagnoses continue to confirm what many parents, friends, co-workers, teachers, and people with Down syndrome already know: “They have the potential to change the world, just like everybody else.”
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