World Down Syndrome Day an opportunity to teach, cherish, and love

Would you throw away a chance at winning the Nobel Prize in order to tell the truth?

That’s what French geneticist Jerome Lejeune did in 1969 when he won the William Allen Memorial Award from the American Society of Human Genetics. This highest distinction that a geneticist can earn was awarded to Dr. Lejeune for his discovery that Down syndrome is caused by a third chromosome on the 21^st pair—a condition we also know as Trisomy 21.

Dr. Lejeune, a devout Catholic, had worked for years to not only find the cause of Down syndrome, but to possibly work for a cure and to teach the world that people with Down syndrome have just as much value and dignity as those without the extra chromosome.

When he found that doctors were using his work for a nefarious purpose, he began to speak out. Prenatal screening had become a relatively new technology, and now that doctors knew that Down syndrome was caused by an extra chromosome, they could use prenatal screens to identify babies who might have Trisomy 21. While this is not inherently wrong, as it can help parents and doctors prepare for possible complications, it soon became apparent that these screens were a way to target pre-born babies who were found to have Down syndrome. Once these babies were identified, doctors would use scare tactics in an attempt to convince parents to abort.

Lejeune was horrified, and he became vocal about the horrors of abortion.

So when he prepared to accept the William Allen Memorial Award, his colleagues warned him against discussing anything other than the facts relating to his scientific discovery during his speech. They told him that any talk of abortion would be professional suicide. But Lejeune knew that he had to tell the truth. Protecting pre-born babies was just too important, so he spoke passionately, saying at one point, “For thousands of years, medicine has striven to fight for life and health against disease and death. Any reversal of this order would entirely change medicine itself.”

He was right. Abortion has changed the medical profession. Today, we have medical professionals who make it their life’s work to kill rather than heal, and who even brag about committing abortions.

That is why on days like March 21—World Down Syndrome Day—we must remember Dr. Jerome Lejeune and his work, examine the travesties of the past when those with Down syndrome were called pejorative names like mongoloids and were locked away in asylums, and look to a future where those with Down syndrome are cherished and loved by all.

World Down Syndrome Day is a day not only to celebrate people with Down syndrome but a day to spread awareness and to help dispel misconceptions—many of which are promulgated by doctors and hospital staff who use outdated information to instill fear into mothers whose babies get a prenatal diagnosis of Down syndrome and who then pressure them to abort.

In the US, nearly 70% of babies prenatally diagnosed with Down syndrome are aborted. In England and Germany, 90% are aborted. And in Iceland, nearly 100% are aborted. Sadly, these countries falsely claim that they’re eradicating Down syndrome, yet it’s obvious that they’re not eradicating the condition; they’re eradicating the people. This eugenic practice is why World Down Syndrome Day is vital. But one day a year is not enough. In order to ensure that the world sees people with Down syndrome as Dr. Jerome Lejeune did, as many parents do, and as we all should, we need a change in mindset. We need examples. And we need the truth.

Organizations like Jack’s Basket tell that truth. Jack’s Basket is a nonprofit organization started by Carissa Carroll—a mom of a little boy with Down syndrome. Carissa didn’t find out until Jack was born that he had the extra chromosome, and she was initially overwhelmed by the lack of information provided by the hospital. Not only that, but she was saddened by the looks of pity, the cold comments, and the apologies she received after giving birth to a beautiful baby boy. So she set out to change that by starting a nonprofit.

Jack’s Basket now creates baskets filled with blankets, toys, booties, a onesie, and a heartfelt letter to parents from Carissa explaining a little bit about her life with Jack. She then distributes the baskets to hospitals to hand out to women who have a child with Down syndrome. In the letter, she wrote that she would not change anything about Jack, that most of her fears have not come to fruition, and that she has been welcomed into a beautiful community of people who are there to support her family. Carissa also described Jack’s personality and how similar he is to his brother. She explained how much their lives have been enriched by Jack’s birth. She described the immense love she has for her little boy. Her goal is for people with Down syndrome to be celebrated.

This is the goal of all within the Down syndrome community. And it has some amazing advocates, including women such as Charlie Fien-Emlen—a 27-year-old woman with Down syndrome whose parents refused to abort her. According to Charlie, “Doctors told my mum and dad that I would be a monster that would destroy their lives! They told my parents I would be in diapers forever! They said I would never read, write, or be independent! All LIES!” Charlie has spoken in front of the United Nations, attends college, and recently got married. She works hard every day to dispel the myth that people with Down syndrome will never accomplish anything.

Lies like these are propagated every day around the world—and only education will dispel them. This is why Dr. Lejeune fought so hard for people with Down syndrome. This is why others in the Down syndrome community fight so hard every day. And this is why we celebrate World Down Syndrome Day—to teach the world that those who have an extra chromosome should be celebrated not feared, cherished not discarded, and loved not eradicated.

• To help young children learn that people of all abilities should be valued, see these two lessons from the Culture of Life Studies Program: Dr. Jérôme Lejeune and Trisomy 21 and All Shapes and Sizes. To learn more about Jérôme Lejeune, read Jérôme Lejeune: A Man of Science and Conscience (Ignatius Press, 2021), by Aude Dugast.