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Gina Johnson, director and founder of Sharing Down Syndrome Arizona, poses with Omary, whose mother, Samantha, Johnson had met several years ago. Samantha had been told when she was pregnant with Omary that her baby had Down syndrome, a hole in her stomach and one foot. Fortunately, hospital staff gave Samantha a New Parent Folder from Sharing Down Syndrome Arizona, the organization Johnson founded and still leads. (Photo courtesy of Sharing Down Syndrome Arizona)
Protect unborn children with genetic anomalies
Guest Opinion//September 8, 2023
Eight years ago, Samantha discovered she was pregnant and was told her baby had Down syndrome, a hole in her stomach, and only one foot. She was devastated. Some of her family members pressured her to abort the baby.
Samantha didn’t want an abortion. But she worried about how her other children might be affected by having a sibling with a disability. In her despair, Samantha attempted suicide.
She immediately regretted her decision and drove herself to the hospital.
Fortunately, hospital staff gave her the New Parent Folder from Sharing Down Syndrome Arizona, the organization I founded and still lead. We celebrate all people with Down syndrome and support their families as they care and advocate for them. Samantha read the information and requested that I come in to meet her — and I did that very afternoon.
Like many who first hear the news of a diagnosis like this, she was heartbroken and needed time to process the grief she felt. What will my child’s life be like? What will my life be like? We all need time to catch our breath.
People with Down syndrome are unique and precious, and we should always advocate for their inclusion and well-being. Thankfully, Arizona law protects all children — born and unborn — from discrimination based on race, sex or disability. But two abortionists and three organizations filed a lawsuit to strike down the protections against discriminatory abortions based on disability. That case will be heard at the U.S. Court of Appeals for the 9th Circuit on Sept. 11. It’s tragic that the abortion industry is pushing for policies that allow children to be aborted simply for their genetic makeup.
The United States remains one of only a handful of countries in the world — including China and North Korea — that allows abortion on demand up to birth (in certain states). Iceland touts its “eradication” of Down syndrome by killing almost all unborn children with the diagnosis; the U.S. doesn’t fall far behind, killing 67% of unborn children with Down syndrome.
On top of the anxiety and fear they may already be feeling, families are sometimes misinformed about their child’s condition, allowing false premises to influence their decision from the start. According to a 2022 New York Times report, many widely used prenatal genetic anomaly screenings are wrong 85% of the time when they get positive results for certain serious genetic anomalies. Conversely, the article describes the experience of a woman who ordered a follow-up test that revealed her baby had no genetic anomaly, but by the time the results came in, she already had the abortion.
While other nations and states are permitting these extreme regimes, Arizona affirms that life is a human right and ensures that families with children who have genetic abnormalities have access to real support — without pressure from profit-driven abortion businesses. Numerous public and private programs are available for individuals with disabilities and their families. Sharing Down Syndrome Arizona has offered hope and support for more than 5,000 families over our 33-year history. And many pregnancy centers provide medical and material resources to families facing unplanned pregnancies, including free ultrasounds, parenting classes and baby clothes.
As for Samantha, I lost touch with her for a while, but years later, at a birthday party for one of my adult “Sharing” friends, I met a little girl with Down syndrome. When I asked what her name was, she replied, “Omary.” From that name, I knew exactly who she was. I smiled at her mom and said, “I know you!” Samantha began to cry.
Omary is smart, capable and funny. She is none of the things the doctors told her mom she would be. Samantha is now the Spanish chapter leader for Sharing Down Syndrome, visiting new families and connecting them with resources that allow them to thrive.
True, Omary and her family will feel frustrated and overwhelmed at times, but many more times they will feel an exquisite joy as they see their child accomplish things they never imagined.
Our law and culture should reflect the ideal that no child — born or unborn — deserves to suffer from discrimination. Let’s ensure that families with children who have genetic anomalies have real support.
Gina Johnson is director and founder of Sharing Down Syndrome Arizona.
