A mother recently told me that, when she found out that her baby had a 99% chance of having Down syndrome, her first course of action was to do an online search for what she could expect. What she found frightened her.
Her initial search highlighted all the negatives—the potential health and cognitive problems, the lack of abilities, and how the child would be behind others his age. She read about society’s views on babies with Down syndrome and the perception that people with Down syndrome are somehow seen as “less” human.
But then she began to read stories of parents whose children have Down syndrome. She began to understand that, while her child’s life may look different, there is so much to be thankful for. There are still milestones the baby will achieve. And there is so much joy.
This is the information that organizations like the National Down Syndrome Society and parents of children with Down syndrome want others to know. Life may look different, but different doesn’t equal bad.
What Is Down Syndrome?
Down syndrome, a genetic condition that occurs when there’s an extra gene on the 21st chromosome, actually has three types. The main type is what people traditionally think when they hear the term Down syndrome and is called trisomy 21. This occurs when a person has three chromosomes on the 21st pair instead of two. All but about 5% of people with Down syndrome have this form.
In a rare genetic condition called translocation, which occurs in three to four percent of people with Down syndrome, “an extra part of the 21st chromosome gets stuck onto another chromosome.” And then in mosaicism, which happens in about one to two percent of people with Down syndrome, the person has “an extra 21st chromosome in some of the cells but not all of them. The other cells have the usual pair of 21st chromosomes.”
According to the CDC, about one in 700 babies born in the US has Down syndrome. That equates to about 6,000 babies born with Down syndrome each year in America.
Down syndrome is not an inherited condition. Any woman could give birth to a baby with it. However, a woman does increase her chances of having a baby with Down syndrome as she gets older. When a woman is under 25, the odds of having a baby with Down syndrome are about 1 in 1,400. At 35, the odds increase to about 1 in 350. And then at 40, the odds increase significantly to about 1 in 100.
People with Down syndrome can have some or many of the following: a small nose, low muscle tone, almond-shaped eyes, flat facial features, cognitive disabilities, developmental delays, heart problems, hearing or vision problems, a deep crease on the palm of the hand, and more.
These reasons are why many moms and dads want to know if their baby has Down syndrome before they give birth.
DS Screening Tests
There are several types of screening tests for Down syndrome. Some are simple blood tests, while others are more invasive and carry a low risk of miscarriage.
Sequential integrated screening is usually done between 10 and 14 weeks of pregnancy. This is the simplest of the tests and involves blood work and an ultrasound to measure the amount of amniotic fluid at the baby’s neck. The doctor can then make a prediction about whether the baby is likely to have Down syndrome. However, if in conjunction with this testing, another blood test is done between 15 and 20 weeks and the results are combined with the first round of tests, doctors can more accurately assess whether the baby will have Down syndrome.
This is only predictive, however, and cannot definitively determine if the baby will have Down syndrome. In fact, these tests sometimes result in false positives—meaning that the tests say the baby has Down syndrome when he or she does not. According to recent reports, the test has higher false positives for younger women. These false positives unnecessarily frighten parents and have even led to women aborting a healthy baby.
If these tests do indicate that something is wrong, doctors and parents may choose to do further tests. These may include an amniocentesis or chorionic villus sampling.
An amniocentesis, which can detect Down syndrome and other genetic problems such as sickle cell disease, cystic fibrosis, and Tay-Sachs disease, is usually done between 15 and 20 weeks. During this procedure, the doctor inserts a needle through the mother’s abdomen to obtain amniotic fluid. The fluid is then examined in a lab. Most mothers opt not to do this test because there is a small risk—less than 1%—of miscarriage associated with this procedure. According to the American Medical Association’s Journal of Ethics, about five to ten percent of women choose to have this procedure done. It is about 99% accurate.
Chorionic villus sampling is another test that can be done to determine if the baby has Down syndrome. Like an amniocentesis, it too can detect other diseases. CVS is normally done earlier in pregnancy than an amniocentesis, typically between 10 and 12 weeks. And it’s about 99% accurate. During this test, the doctor will remove a tiny piece of tissue from the placenta. This can be done via a needle inserted through the mother’s abdomen or via a catheter inserted through her cervix. The tissue is then sent to a lab for examination. This is not a routine test. According to the Cleveland Clinic, “CVS testing is not a standard part of prenatal care. Your healthcare provider may offer this option if you have certain risk factors, abnormalities detected on early ultrasounds or abnormal genetic (vs blood) screening.” There is about a 1% risk of miscarriage with this test as well.
There are many reasons why people would want definitive testing to determine if their child has Down syndrome. Many just want to know so they can medically, emotionally, and physically prepare. They may want to make sure that the hospital they plan to deliver in is properly equipped in case the baby needs extra help. They may want to make sure that they have time to process the emotions that come with having a baby with special needs. And sadly, some may want to know because they would choose to not continue with the pregnancy if something is “wrong” with the baby.
Down Syndrome Abortion Rate
A study of abortions in the United States from 1995-2011 found that 67% of women who were told their baby would have Down syndrome decided to abort. This number is much higher in other countries. BBC reports that 90% of women in England whose babies are diagnosed with Down syndrome choose to abort.
According to The Atlantic:
In 2004, Denmark became one of the first countries in the world to offer prenatal Down syndrome screening to every pregnant woman, regardless of age or other risk factors. Nearly all expecting mothers choose to take the test; of those who get a Down syndrome diagnosis, more than 95 percent choose to abort.
The article then goes on to say that, in 2019, only 18 babies with Down syndrome were born in the entire country.
We see that trend in other countries as well. For instance, the Life Institute reports that in Iceland, nearly 100% of babies with Down syndrome are aborted. And in Germany, more than 90% of babies with Down syndrome are aborted.
This is a tragedy of epic proportions. The idea of killing a child because he or she doesn’t live up to the parents’ or society’s standards is a form of eugenics.
According to Britannica, eugenics is “the selection of desired heritable characteristics in order to improve future generations, typically in reference to humans. The term eugenics was coined in 1883 by British explorer and natural scientist Francis Galton, who, influenced by Charles Darwin’s theory of natural selection, advocated a system that would allow ‘the more suitable races or strains of blood a better chance of prevailing speedily over the less suitable.’”
Notice the term “more suitable.” When we say that human beings with limitations, diseases, health problems, or disabilities are less worthy than those who have no such problems, we demean them. Our humanity and our value are not dependent upon what we can or cannot do. We have value and worth as human beings simply because we are human beings.
People using their power to choose whom to eradicate from the world is not only despicable but frightening. Our society often teaches that only those who are flawless can be productive or have worth. But this is far from the truth. We all have gifts and abilities we can share with others.
As Fr. Shenan J. Boquet recently wrote:
Rather than weighing human beings in the balance, deciding which ones are “worthy” and which are not, we must simply love humans. Love them the way God the Father loves us—selflessly, unconditionally, without calculation, without asking for anything in return. Simply because this is the right thing—not the “useful” thing—to do; because there is an objective standard higher than us, a law that cannot be seen or measured, but that is very real, transcending our petty and narrow short-sightedness.
When we love each person for who he or she is, we are able to see the immense gifts they offer and to appreciate them as valued human beings.
Abilities of People with Down Syndrome
Children with Down syndrome have varied abilities. Many can walk, talk, smile, give hugs, go to school, hold jobs, and advocate for themselves. Some can even live on their own. In fact, there are many people with Down syndrome who have achieved significant accomplishments.
- Katie Shaw is a young woman with Down syndrome who advocates against abortion, has hobbies, has held a job, and speaks in front of pro-life groups.
- Collette Divitto has Down syndrome and runs her own cookie business.
- John Lee Cronin helps his dad run a thriving business.
The list goes on and on. Just as all children without Down syndrome are different and have individual gifts, the same is true for children with Down syndrome. And just as parents of neurotypical kids are charged with nurturing their children’s gifts, so are parents of children with Down syndrome.
This is why the National Down Syndrome Society “advocates that up-to-date and accurate information on Down syndrome be delivered to women and families at the time of diagnosis.” Further, the organization works with doctors and families to help them see that children with Down syndrome should be welcomed, not feared. Only when properly nurtured and loved will these children reach their full potential.
It’s vital for parents who are facing a Down syndrome diagnosis to learn all the facts, to see what life is really like, and to understand that, as with neurotypical children, those with Down syndrome can bring immense joy.
His family calls him Iron Will because in his 28 months he has been through a lot, yet Will is a fighter. William Daub was born with Down syndrome, but this little guy—who is the youngest of eight—has already proven that, while children with Down syndrome may have challenges, a supportive family and a great team of therapists make a huge difference.
Will’s family was told there was a 99% chance of him having Down syndrome when his mom, Catherine, was pregnant with him. The diagnosis scared her, not because she was worried whether she would love him (she already did!), but because she wondered how the world would treat him. A Google search right after this diagnosis showed Catherine all the negatives she and her family could be facing.
But Will’s arrival came, and the family felt immense joy at finally getting to hold him. The fear of losing him prenatally through spontaneous miscarriage melted away, and the thrill of a new baby permeated the hospital room.
Will’s first year was fraught with health problems, but these have only strengthened Catherine’s resolve to serve as Will’s biggest advocate. From heart problems to reflux to swallowing difficulties to infantile spasms to partial hearing loss to lung and thyroid issues, this little guy has been through so much. But that first year was also filled with the love of older siblings who dote on Will. It was filled with a caring family who began to rely more on each other. And it was filled with excitement when Will reached milestone after milestone.
And as for Iron Will, he powers through every day with a smile, a love of music, and endless hugs for his family.
Despite his low muscle tone, Will is now walking and learning to run. He wants to keep up with his big brothers and his big sister. His therapists say that he’s making great strides with both his gross and fine motor skills. He says a few words, but he speaks mostly through sign language. He knows about 20 signs. He has even begun to string two- and three-word signs together to form short sentences.
Will has come a long way, and his family wants those facing a diagnosis of Down syndrome to understand that all babies—no matter their abilities—should be celebrated, supported, and loved.
Life is precious, and it is our job as parents, friends, family, or just members of the same community to support those with different abilities. Eradicating one type of person because they are not “perfect” devalues the immense gift of their lives.
We must remember that no one is perfect. We all have limitations. And life never promises anyone a healthy tomorrow.
So let us look at the people around us and be grateful for who they are rather than lament who we wanted them to be. With each new life, God has given us a tremendous gift. It is our job to protect and cherish that gift.