Putting a Face on Down Syndrome

In the last two or three years, at high schools from Florida to Illinois, students have been forsaking quarterbacks and cheerleading captains and electing teenagers with Down syndrome to be homecoming kings and queens.

Last year, Target featured a boy with Down syndrome in one of its ad circulars, and the clothing company Wet Seal recently signed as a model a spunky teen with Down syndrome named Karrie Brown, after she received more than 11,000 likes on her Facebook page thanks to a little cheerleading from the company.

These and other cultural celebrations of children with Down syndrome are occurring in the US at the same time as the spread of non-invasive prenatal tests that are 99 percent accurate in ascertaining whether a child in the womb will be born with Down syndrome. These new tests, which are safe for mother and child (unlike older ones offered through amniocentesis), are expected to be offered widely to pregnant women in the near future. It is also expected that the tests will lead to an increase in abortion of babies with Down syndrome.

Unfortunately, it is difficult to gauge what the actual abortion rate of babies with Down syndrome currently is. Some in the pro-life movement have claimed that 90 percent of all babies with Down syndrome are aborted. However, in an article in the Winter 2013 issue of the Human Life Review, writer Matthew Hennessey argued that that figure is unsupportable because not all pregnant women have their babies tested for Down syndrome. Looking at studies from other countries, which are based on larger sample sizes, Hennessey said the percentage of babies who are aborted because they have Down syndrome is probably somewhere upward of 75 percent.

Once the new, non-invasive tests are offered widely, the abortion rate of babies with Down syndrome is expected to increase.

While the lives of babies with Down syndrome are quietly snuffed out, our culture will likely continue to celebrate the accomplishments of older children and adults with Down syndrome. Why the disconnect?

As a society, many of us employ a kind “doublethink” when it comes to Down syndrome, according to Randy Engel, co-founder and national director of the International Foundation for Genetic Research/Michael Fund and the founder and director of the US Coalition for Life. “We are willing to standby and tolerate, if not approve outright, the killing of children with Down syndrome by their parents, either in the womb or in the test tube,” she said. “But if parents are willing to raise a child with Down syndrome or the child is somehow able to escape the eugenic net, then we think that is fine. At birth, Down syndrome has a face and once we see that face it touches our hearts. Eugenic killing, like all human killing, is easier to accept or approve when the victims are without a face.”

Engel went on to say that the conflicting ideas our society has about Down syndrome have been shaped by Down syndrome advocacy and support groups. All but one of these groups is “neutral” on the issue of eugenic abortion of Down syndrome babies. She contacted many of these agencies and learned that their Boards of Directors are generally split down the middle—half being pro-life and the other half being in favor of the parents’ right to kill a Down syndrome child in utero—hence the “neutral” stance.

“Frankly, I find it difficult to see how these groups continue to raise money for Down syndrome programs and research, yet refuse to defend the life of the Down child in utero,” said Engel.

Engel points out that although there is a prenatal test for sickle cell anemia, the African American population has not proven anxious to abort babies over that diagnosis. Meanwhile, the prenatal test for Tay-Sachs disease has led to very high rates of abortion of Tay-Sachs children among those of Ashkenazi Jewish descent, she said. This has basically eliminated research funding for Tay-Sachs, with the exception of late onset Tay-Sachs.

“I believe that if wombs had windows, and mothers and fathers could see the faces of their unborn children, including those with physical and/or mental handicaps—I think that eugenic abortion would suffer a very hard blow,” said Engel.

“I, for one, am very happy to see how the popular media has finally put a real face on children with Down syndrome, sometimes a humorous face, sometimes a contemplative face, but always a beautiful face of a fellow human being with the ability to love and be loved,” Engel continued.

So what has contributed to putting a face on Down syndrome in the cultural imagination? For Van Waites, a Mississippi native whose 11-year-old son, Cole, has Down’s syndrome, inclusion, education, and technology can be credited with much of it.   

“Children with any disability are being more included in school, sports. Kids with disabilities, any disabilities, are not being shoved in a corner anymore,” said Waites. In the past, there was not information available to people about Down syndrome, he said. “Just 20 years ago, Down syndrome kids were institutionalized. [Today there are] so many special therapies out there to help kids.”

Engel agrees. “Thanks to the trend over the last half-century of de-institutionalizing care for children with Down syndrome, mainstreaming them educationally, socially, and spiritually where applicable, and the spectacular explosion of programs for children and adults with special needs, like the Special Olympics, I think children with Down syndrome are finally coming into their own,” she said.

Amy Julia Becker, who has three children, including an eight-year-old daughter named Penny who has Down syndrome, has written an e-book, What Every Woman Needs to Know About Prenatal Testing.  Becker said she can see both positive and negative aspects to highlighting the accomplishments of those with Down syndrome. “I was thrilled to see a person with Down syndrome run a marathon, but at the same time, the fact these things make news [bothers me.] They are just like other kids,” said Becker. “This isn’t exceptional.”

Technology has shown itself to be a blessing and a curse for those with Down syndrome, according to Becker. “It’s a better time than ever to bring a child into the world with Down syndrome, if you choose to bring that child into the world,” she said, citing the technologies and therapies that are now available.  “The flip side is that because of advances, people can abort them more readily.”

“Social inclusion for those with Down syndrome is a positive thing,” she said. “At the same time, the abortion rates of children with Down syndrome are very high.”

Receiving the diagnosis

Erin Norcia, who lives in New Jersey with her husband, Christian, her son, Alex, and her daughter, Julia, remembers how after giving birth to her daughter she overheard the nurse in the hospital making a comment about Julia’s eyes and asking someone else, “Do the parents know?”

After that, a geneticist came to her room and told her that genetic testing would need to be done on Julia. Seven days later, Norcia was sitting in her living room with her mom when the pediatrician called. “He said, ‘Julia has Down syndrome,’ and he paused to let me react however I wanted to,” Norcia recalled. “I broke down. When I hung up, my mom hugged me, and I cried over Julia. I had just had a baby. I was sleep-deprived, and I had just had a C-section, and then you hear the news.”

“After a few days, the more I cried, the more I felt like I was insulting her,” said Norcia. “Julia is who she is, and it’s my job to help her have a good life. I am crying over who she is, and that seemed so wrong to me, so I quit crying, and I sucked it up.”

As for Norcia’s husband’s reaction: “He was upset, he was sad about the unknown,” she said. “He didn’t know what all this meant. I think when I decided to say…‘Let’s move on, it’s Julia,’ he fell right in line.”

Becker said her reaction upon learning Penny’s diagnosis was a negative one. “I was very afraid, and fear was the biggest emotion,” she recalled. “I was afraid I wouldn’t know how to be her mom, afraid I wouldn’t love her, wouldn’t be proud of her. I didn’t think it was a positive thing for our family, thought she would be missing out on something good in life. I felt some guilt, thinking I had caused her to have Down syndrome.”

Her husband suffered a more severe reaction during the first 24 hours after Penny was born. He said he went into a “state of darkness,” but then he was able to say, “I love her, she’s our daughter.”

When his wife was pregnant, Waites, like a lot of men who are college football enthusiasts, had dreams of Cole being a linebacker. “I was devastated for the wrong reasons,” he said of hearing his son’s diagnosis. “Our dream for the child didn’t come true, but it [was] not the child’s dream. It’s our dream. Every child has the right to live his own life.”

As it turns out, Cole plays football, basketball, and soccer, and he enjoys going hunting with his dad. “He’s a boy,” said Waites.

Different to care for, not necessarily more difficult

Are children with Down syndrome more difficult to take care of than children who do not have it? “No,” Waites answers, laughing. “I had a teenage daughter.”

“We are very blessed with Cole,” Waites said. “Half of all Down syndrome babies have heart defects, and have to have surgery within the first couple of years. He had a small hole, but the doctor said most of us are born with a small heart defect, and it heals up.”

“He has allergies and ear tubes and a little asthma,” Waites explained, but said that both the allergies and the asthma are inherited traits, not results of Down syndrome.

“Things become a routine. Therapy has become a way of life,” he said. “None of us are perfect. We all have something—high blood pressure, diabetes.”

“There are a number of medical problems associated with the disorder, of course, some more serious and life-threatening than others,” said Engel, who has more than 35 years of experience working with families who have children with Down syndrome. “But with advances in early therapeutic interventions of all kinds, including early fetal interventions which the Michael Fund is pioneering, these difficulties are diminishing and will continue to diminish.”

One percent of all children with Down syndrome will be diagnosed with childhood leukemia. On the positive side, the life expectancy rate for children with Down syndrome has gone up, from 25 in 1980 to 60 today, according to the National Down Syndrome Society website.

“I think that the word ‘different’ would be more accurate than ‘harder,’ with regard to raising any child with special needs,” said Engel.

The Norcias say that, so far, there have been “no surgeries, no health issues” with Julia. “The only thing she had was acid reflux when she was really little,” Erin said. “She was a soy baby, and took Zantac to help with the reflux and because she was losing weight. She was hungry, and she would eat the world, if you would let her do it.”

Becker said that Penny’s health issues have been fairly typical. She takes Penny to eye and ear doctors twice a year; her daughter has had tubes put in her ears four times. She has had two minor eye surgeries, and a heart procedure at 14 months. She has physical, speech, and occupational therapy at school.

Becker said that her son has actually been more difficult within their household than Penny, but that Penny is more difficult in a classroom setting because of her impulsivity.

Part of a regular second grade public school classroom, Penny is in the top reading group in her class. Almost all children with Down syndrome are going to learn how to read, according to Becker.

Math is more difficult for Penny, though, and she is in a group of about six children, one of whom has special needs, who are struggling with that subject.

Waites’ son, Cole, also goes to public school, where he spends 60 percent of his time in regular classes, and the rest in special ed classes. “He loves school—regular school—and the kids love him,” Waites said. “His teacher told us, ‘Cole is a blessing to have in the classroom.’” He is known as “the politician” at church, because every Sunday he shakes the men’s hands. He holds open doors for the girls and women.

While recognizing the accomplishments and abilities of children with Down syndrome is important, it can be a double-edged sword; there is the risk of transmitting the message that people with Down syndrome deserve to live because of what they can do. Those with more severe disabilities may be seen as expendable.

Although Christian churches have accepted people with Down syndrome, a patronizing attitude can also be present, according to Becker. “As if all they have to contribute is their happy spirit,” she said. Becker added that it is important not to portray Down syndrome as a disability that is on a higher plain than other more severe or widely misunderstood disabilities.

There are stereotypes about people with Down syndrome, including that they are always happy and perhaps more loving than the average person. “People with Down syndrome are seen as happy, but [Penny] is also grumpy and gets mad. She has a range of emotions, but I would mostly characterize her life as a positive one,” said Becker. “She is loving, but no more loving than her little sister.”

On the subject of future technologies or surgeries than could perhaps “cure” Down syndrome in the womb, Becker said she has mixed feelings. “At the end of the day, I don’t want to change Penny any more than I would want to change William or Marilee. Not that there aren’t things I would want to change about her. If I could make her ears bigger, so she wouldn’t need ear tubes, that would be great.”

“There is a difference in changing a whole chromosome—it is completely unknown if you would be changing the personality of the person,” Becker said. “I did ask a doctor about it, and he said, ‘We just don’t know.’”

Norcia agrees she would never dream of altering who Julia is. “I believe in God’s plan and to consider altering a life He has made is unfathomable,” she said, adding that she does not believe this type of “cure” will ever become a reality.

Engel added that the kind of genetic engineering envisioned in recent news articles is very much in the distant future, and added that it might be a case of “using a sledge hammer to kill a gnat.” She said it was important to consider the medical adage “First do no harm.”

Becker said that although new prenatal testing has a high likelihood of increasing the abortion rate, the window of opportunity to convince pregnant women who receive a diagnosis of Down syndrome not to abort has not closed. 

On the legislative level, there has been good news for children with Down syndrome. North Dakota passed a law that bans abortion of babies with Down syndrome and other disabilities. In addition, the Massachusetts and Kentucky state legislatures voted to provide funding so that doctors will give accurate information about Down syndrome with a prenatal diagnosis.

It is very important for families of children with Down syndrome to keep the true face of Down syndrome before the public imagination, Becker believes. “[T]hose of us with children with Down syndrome have the responsibility of telling our stories as publicly as possible, helping people imagine a good life for a family and individual with a child with Down syndrome,” said Becker.

“It is hard for us to imagine the good life for a child with Down syndrome,” she continued. “We have difficulty imagining the future. When you have a typical kid, you know they will struggle, but you imagine the possibility in their lives. With Down Syndrome, you often only imagine the struggle.”

Related Reading: “Prospective Chromosome Therapy for Down Syndrome: Hopes, Fears, and Ethics” by Sister Renee Mirkes