Down syndrome

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CUA panel: Prenatal testing poses unique threat to preborn children with Down syndrome

March 21, 2024 Catholic News Agency 1
Carissa Carroll, pictured with her son Jack, founded the nonprofit organization Jack’s Basket to celebrate babies with Down syndrome / Credit: Screenshot/EWTN Pro-Life Weekly

Washington, D.C. Newsroom, Mar 21, 2024 / 09:00 am (CNA).

As many countries celebrate World Down Syndrome Day on March 21, a panel of pro-life leaders and scholars is calling attention to the threat that prenatal testing poses to preborn children who are diagnosed with Down syndrome in the womb.

“[The mother] often faces tremendous internal and external pressure to undergo an abortion,” said J.D. Flynn, who moderated the panel at the Catholic University of America’s Institute for Human Ecology and is himself the father of two children with Down syndrome. 

Prenatal screening within the first 11 through 14 weeks of pregnancy can determine whether a preborn child has a higher likelihood of having Down syndrome, but a follow-up diagnostic test can confirm whether the child has the condition. Although efforts to destigmatize the condition have had some success, the likelihood that a mother will abort her child increases dramatically after such a diagnosis. 

A 2012 study that compiled data from 24 studies between 1995 and 2011 found that more than two-thirds of preborn children who were diagnosed with Down syndrome in the womb were killed via abortion. Rates throughout Europe are even higher — more than 90%. In Iceland, nearly all preborn children diagnosed with Down syndrome are aborted and only about two or three children with Down syndrome are born every year.

Mary O’Callaghan, a visiting fellow at Notre Dame University’s McGrath Institute for Church Life, noted a disconnect between the “more positive” attitude the public expresses about people with Down syndrome and the “more aggressive targeting” of abortion for preborn children with Down syndrome.

“Those with Down syndrome are increasingly showing us their ability to flourish,” said O’Callaghan, who also has a child with Down syndrome. In spite of this, she said, “we’re in a much worse place in respect to abortion and Down syndrome.”

Bridget Brown, a 36-year-old woman with Down syndrome who serves on the National Catholic Partnership on Disability Council on Intellectual and Developmental Disabilities, expressed the same concern. 

Noting the trends in countries such as Iceland, Brown said she may be from the last generation of people with Down syndrome: “The world may never again benefit from our gifts.”

“This is genocide — the systematic killing of a whole people,” Brown added, citing a letter she wrote to Pope Francis about the situation in Iceland before meeting the pontiff in 2017.

Bridget Brown meets with Pope Francis in Vatican City on Oct. 21, 2017. Credit: L'Osservatore Romano.
Bridget Brown meets with Pope Francis in Vatican City on Oct. 21, 2017. Credit: L’Osservatore Romano.

According to Tracy Winsor, who co-founded an organization to support couples who carry their children to term after a prenatal diagnosis called Be Not Afraid, many women consider abortion after a diagnosis because receiving the news is a “traumatic event” for most couples and is presented as a “worst-case scenario.” 

Winsor noted that doctors will present a lot of information, which “can be overwhelming” at the moment. She advises parents to immediately connect with parents who have children living with Down syndrome and to advocates for individuals with Down syndrome.

O’Callaghan agreed: “Meeting with other parents around this time is very helpful [in reducing abortion].” Prenatal testing, she noted, should be oriented toward preparing for their child.

“They need to think about prenatal testing oriented toward the health of their child,” O’Callaghan said.

Brown similarly noted that like everyone else, her “life is filled with hopes and possibilities” and encouraged couples who receive a prenatal Down syndrome diagnosis for their preborn child to approach the situation positively. 

“Make plans based on dreams and not on fears,” Brown said. “Believe in yourself and your child.”

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News Briefs

Newest Barbie doll is ‘monumental,’ Down syndrome advocate says

May 14, 2023 Catholic News Agency 2
Mattel’s newest Barbie doll / Photo courtesy of Mattel

Denver Newsroom, May 14, 2023 / 07:00 am (CNA).

Many little girls grow up playing with Barbie dolls and wishing that a doll would look just like them. Now, little girls with Down syndrome can live this dream. The American toy company Mattel announced April 25 that the first Barbie with Down syndrome would soon be hitting the shelves.

The first Barbie doll was released on March 9, 1959. Over the years, Mattel has released several kinds of Barbies representing different shapes, sizes, races, and ethnicities. In 1980, Mattel released the first Black and Hispanic dolls named Barbie. In 2015, three new body types were introduced: curvy, petite, and tall. And in 2022, the first Indian Barbie was manufactured. Currently, Barbie features 35 skin tones, 97 hairstyles, and nine body types. 

Now Mattel is making headlines with their newest Barbie, who represents someone with Down syndrome, and it has already sold out online. 

To ensure an accurate representation, Barbie worked with the National Down Syndrome Society (NDSS), a group that empowers those with Down syndrome by working to create policy change, provide resources, and engage with local communities.

According to a press release from Mattel, the new doll features a new face and body sculpt to more accurately represent a woman with Down syndrome. The doll’s yellow- and blue-colored dress is patterned with butterflies, symbols, and colors associated with Down syndrome awareness. The doll also wears a pink pendant necklace with three upward chevrons, representing the three copies of the 21st chromosome. Additionally, this new Barbie is wearing pink ankle foot orthotics (AFOs), as some children with Down syndrome wear AFOs to support their feet and ankles.

“As the most diverse doll line on the market, Barbie plays an important role in a child’s early experiences, and we are dedicated to doing our part to counter social stigma through play,” said Lisa McKnight, executive vice president and global head of Barbie and Dolls, Mattel, in the press release. 

“Our goal is to enable all children to see themselves in Barbie while also encouraging children to play with dolls who do not look like themselves,” she said. “Doll play outside of a child’s own lived experience can teach understanding and build a greater sense of empathy, leading to a more accepting world.”

Erin Thielman, a Down syndrome advocate and mother of three, said she’s grateful for the new doll because her youngest son, Andrew, has Down syndrome. 

“So many people support those with Down syndrome, yet there is a lack of representation for our wonderful community with regards to dolls and toys,” she said in an interview with CNA. “I found out about the new doll from social media. I follow many teenagers and adults with Down syndrome. It warmed my heart so much to see them so happy and excited.”

Thielman added: “A doll that represents girls with Down syndrome is monumental. It helps to inspire not only representation but also, it inspires confidence. With these dolls, girls with Down syndrome can hold their heads even higher knowing that they are special.”

Thielman’s 10-year-old daughter, Abby, was also thrilled to see the new Barbie. When Abby was 8 years old she reached out to Mattel asking them to make a doll with Down syndrome. They responded quickly saying they loved the idea and would pass it along. When Abby saw this new doll, tears of joy filled her eyes.

“I feel happy about the new doll because it embraces the beauty and amazing-ness in people who are unique, especially children with Down syndrome,” Abby said in an interview with Pro-Life Update. “You should never think of a disability as a disability; you should think of it as a different ability.”

In the United States nearly 70% of babies diagnosed with Down syndrome in the womb are aborted. When Thielman received the prenatal diagnosis for Andrew, abortion was suggested.

“Unfortunately, too many babies who are diagnosed prenatally with Down syndrome aren’t given the same chance as Andrew. And it breaks my heart,” Thielman expressed.

She is hopeful this new doll will bring light to this sad reality and show how children with Down syndrome are “intentional blessings from God.”

“Perhaps a Ken doll with Down syndrome? Barbie needs a friend!” she added.

You can find resources to help those raising a child with Down syndrome here.

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News Briefs

Twin sisters with a special bond speak out for the unborn

January 20, 2023 Catholic News Agency 1
Sister Mary Casey O’Connor, a Sister of Life, and her twin sister, Casey Gunning, teacher’s assistant and lifelong athlete in the Special Olympics / Courtesy of Sister Mary Casey O’Connor

Washington D.C., Jan 20, 2023 / 08:40 am (CNA).

Sister Mary Casey O’Connor has more than 100 sisters. But only one of them is her twin sister: Casey Gunning, who has Down syndrome.

“I wish everyone had someone like her because she just taught me what it means to love and to not expect anything back,” O’Connor told CNA. “And I mean, that’s ultimately our experience of God … Casey, for me, is an expression of God’s love.”

The sisters were featured speakers at Friday’s Life Fest and the 50th annual March for Life in Washington, D.C.

Each of them advocate for life, even if in different ways: O’Connor is a member of the religious community Sisters of Life, while Gunning serves as a teacher’s assistant and an athlete in the Special Olympics.

Describing her sister’s pro-life witness, O’Connor explained that “it’s not even like a conscious thing, she is constantly choosing just to live life to the full — and she receives the gift of her own life, and that, I think, is the most powerful kind of witness that she gives off.”

For her part, O’Connor joined the Sisters of Life, an order dedicated to promoting the inherent dignity and worth of every human person, in 2015.

The late Cardinal John O’Connor founded the Sisters of Life in New York in 1991. Based in the New York area, the order has sisters in Denver; Philadelphia; Phoenix; Washington, D.C.; and Ontario, Canada. The community of more than 100 Catholic religious women profess four vows: poverty, chastity, and obedience, and “to protect and enhance the sacredness of human life.”

Among other things, the sisters dedicate their lives to serving women vulnerable to abortion, offering life-affirming support to pregnant women in need, hosting retreats, evangelizing, practicing outreach to college students, and helping women who suffer after abortion.

O’Connor took her last name from the founder of the Sisters of Life. But her middle name, she said, comes from her sister.

“She was so honored that I took her name that she started going by Casey Mary,” she said, adding that “Mary” is Gunning’s confirmation name.

Even their shared age is a celebration, O’Connor revealed. While she clarified that they are 39 years old, Casey, she said, is “so happy to be [turning] 40.”

“She loves getting older because she really loves life,” O’Connor explained, saying that every year they spend six months preparing for their birthday, and, every year, they spend another six months winding down from their previous birthday.

In other words, she said, Casey “loves life.”

The youngest siblings in a family of four children grew up in Littleton, Colorado. The two older siblings were adopted, and the twins came as somewhat of a surprise — they were born after their mother was told that she could not have children. 

They have been inseparable ever since.

“Just her presence in my life has had one of the biggest effects on just shaping my worldview and my view of life, my view of the faith, my view of the human person,” O’Connor said. 

Casey, she said, helped her gain perspective on life.

“She’s kind of helped ground me in things that are important, and, kind of unintentionally, invited me to let go of things that are not as important, especially eternally,” she said. “And I mean, love literally is oozing out of her.”

Sister Mary Casey O'Connor and Casey Gunning, teacher’s assistant and lifelong athlete in the Special Olympics as babies. Courtesy of Sister Mary Casey O'Connor
Sister Mary Casey O’Connor and Casey Gunning, teacher’s assistant and lifelong athlete in the Special Olympics as babies. Courtesy of Sister Mary Casey O’Connor

“She places no judgment, she always forgives, she always gives the benefit of the doubt,” O’Connor continued. “She always sees the good in the other. And I desperately want that for myself and realize how far I am from that.

“But being in her presence invites me to do it, because she just does it naturally.”

Her sister’s presence also had an impact on her vocation.

“Once I met the Sisters of Life, it kind of all made sense that God had been preparing my heart for so many years, learning how to kind of look at each person for who they were, to see the good in them, to see past what, oftentimes, the world fails to see past,” she said. 

O’Connor shared her approach for instances where she might encounter a pregnant woman expecting a baby prenatally diagnosed with Down syndrome — a woman who might feel scared or tempted to choose abortion. She said she would, first of all, listen.

“Because I think it’s so important just to be a space where someone can express the fears, and the sadness, and the sorrow and the kind of maybe a letdown of expectation — and just receive it and validate it,” she said.

“And then, I couldn’t help but share my own experience of Casey and invite a woman to … trust that God gives us gifts in ways that we don’t always expect or want or would choose for ourselves.”

“On a tangible, concrete, human level, Casey has been the tremendous — the tremendous — blessing of my life, and I just want to invite someone else to step out in faith and trust that God desires to be generous in the unknown,” she said.

If people remember one thing from their speeches on Friday, O’Connor said, she wants it to be that “God doesn’t make mistakes, that he knows what he’s doing.”

“And he has a great desire for us to need him, and he actually wants us to need each other,” she added. “That is what Casey and I — the gift that we have in each other — is that he kind of wrote that into the fabric of our relationship from the very beginning.” 

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