Kate Cox and Stories of Trisomy 18
by Sarah Terzo
This is Part 1 of 2. We will run Part 2 next week, explaining what a D & E abortion entails as the proposed alternative to giving birth.
Kate Cox sued Texas for permission to abort her baby, who had Trisomy 18. Cox’s doctor told her that her baby was “incompatible with life.” When Cox asked how long her daughter could survive in the “best case scenario,” the doctor said a week at most. Cox lost her case but traveled to another state to abort her daughter, presumably through a D&E dismemberment abortion.
Cox’s doctor gave her false information, whether due to medical ignorance or willful deceit. There’s no cure for Trisomy 18, but these children can live into their teen years and beyond.
Numerous media outlets gave the statistic that only 5-10% of children with Trisomy 18 reach their first birthday. What they didn’t say was the reason – most hospitals won’t treat these children. Given proper care and needed surgery, 90% of these babies survive.
Bridgit Nora, from the Trisonomy 18 Foundation
John Hart Mack, from the Trisonomy 18 Foundation
Nora
Lauren’s daughter Nora, who had Trisomy 18, lived to be fifteen and a half. Lauren says:
Nora was exceptionally sweet and happy, and loved people, snuggling, holding hands, playing in water, school (especially her one-to-one aide, Ms. O, who was with her from kindergarten . . . and was like another mother to her) and she was a favorite with staff and students alike.
She especially loved music, and silliness made her squeal with laughter, especially if my mother-in-law or children would dance around and sing . . . She liked to give hugs and kisses . . .
Nora was comfortable, content, and loved.
She describes Nora as “cute as a button, with wild curly hair and the longest eyelashes imaginable, framing deep, wise brown eyes.”
Some children with Trisomy 18 must be tube fed, but Nora could eat by mouth and, according to Lauren, “loved food.” On Thanksgiving, Lauren said, Nora got to be “the center of attention” and “couldn’t get enough of all the different things to taste.”
People with disabilities have inherent worth and value by virtue of their humanity, and who they are, not by how they affect the lives of nondisabled people. Nevertheless, Lauren says that having Nora in their lives changed her entire family for the better:
We all are more patient, less judgmental, and accepting of others due to having her, and know the value of interdependence rather than fierce independence. We are comfortable asking for help and offering help in ways I don’t think we’d be if she hadn’t come into our lives.
Lauren says:
We didn’t know how to care for a medically fragile, differently-abled child, but we didn’t really know how to care for our first healthy child either!
In many ways, Nora was our easiest. She never had friend drama, jealousy, or anger. She never felt let down or left out. She was just happy to soak in whatever was happening around her and be a part of things.
Lauren wants people to know, “All people have inherent value. Their quality of life isn’t measured by what they can or can’t do.”
Verity
Beverly Jacobson wrote an article for Newsweek about her daughter, Verity, who is about seven.
According to Jacobson, Verity is “living an amazing life with Trisomy 18,” and her other children “adore their little sister.”
Jacobson argues that Verity has the same value as any other child. She says:
I don’t know how long Verity will live. But I do know she is not in pain. She is not suffering. She is a joyful and happy child. She is not a “drain” on our family. She is our most precious blessing! . . . I thank God for her.
Verity inspired Jacobson to set up Verity’s Village, an organization that helps families with children with Trisomy 18.
Faith
Faith Smith has Trisomy 18. In honor of her twelfth birthday, her parents sent a postcard to all the doctors they’ve seen – both the ones who treated Faith and those who refused.
The postcard said:
Faith is loud, happy, sweet, and well-loved. She gives the tightest hugs, best kisses, and has the craziest dance moves of us all. She loves swimming, horseback riding, balloons, and playing the piano. Faith’s quality of life is the envy of all that know her.
Faith’s sister Grace wrote:
As much time as Faith has spent in a hospital, she’s spent much more than that traveling, laughing, and loving her life… She loves walking around museums and going on Starbucks runs. Her life is full of fun.
Doctors told Faith’s mother that her other children would be harmed unless she aborted Faith. But Grace says, “It is my complete honor and joy to spend every day caring and spending time with her. It’s the best job I’ve ever had.”
Tabitha
Tabitha Ensmnger, from KTBV Facebook page
KTBV News featured the Ensminger family and four-year-old Tabitha, who has Trisomy 18.
Tabitha’s older sister, Esther, mentioned Tabitha in her graduation speech, saying, “My baby sister Tabitha has a superpower. She has Trisomy 18, which means she is the happiest and the most lovable baby ever.” Esther told KTBV News, “[J]ust to see her smile every day, seeing her face – it’s just been awesome.”
Tabitha’s mother Sandy said, “Tabitha is just a ray of sunshine all the time. She’s just so precious and, like, her smile is contagious. As soon as she starts smiling, watch out, everybody’s got a smile.”
The Ensmingers regularly give support to other families beginning their Trisomy 18 journey. In response to the family’s activism, Governor Brad Little declared March Trisomy 18 Awareness Month.
The Ensminger’s goal is to educate people, including medical professionals, about the value of children with Trisomy 18 and the fact that they can survive with proper care. Together, Tabitha and her family are giving hope to others and fighting against the misconceptions about Trisomy 18.
The family is involved in promoting Simon’s Law. Simon’s Law is named after a Kansas child with Trisomy 18 who died after being refused medical care. Simon’s Law, which has been passed in several states, forbids doctors from refusing medical care to children with disabilities.
Sandy says, “I want people to know that there’s hope and [Trisomy 18 is] not something fatal… Hopelessness is fatal.”
===================================
For more of our coverage on the Kate Cox case specifically, see:
For more more our coverage on children with disabilities, see:
Bigotry against Babies with Down Syndrome (United States)
Bigotry against Babies with Down Syndrome: International Experiences
A Lawyer’s Turnaround on Baby Doe with Her Own Down Syndrome Baby
Thank you, Sarah, for sharing these wonderful stories! Society needs to know about these lives, and you have helped to shine needed light on them.
[…] This is Part 2 of 2. Part 1 last week covered children with Trisonomy 18. […]