Tricia Roos, the head coach of the Bishop Lynch volleyball team has won three state championships in her seven years as head coach is used to adversity. She’s taught her students about faces challenges on and off the court. Now it’s her turn.
Roos’ baby has trisomy 18, a chromosome disorder so bad that doctors recommended she have an abortion because he baby may not survive the pregnancy. But Roos says abortion is not an option.
Trisomy 18 is considered to be incompatible life with life. It is caused by an extra copy of the number 18 chromosome and according to the National Institutes of Health, only half of unborn babies with Trisomy 18 survive labor and delivery. Those who do survive usually have birth defects and are given a poor prognosis. Less than 10% will live to see their first birthday.
“She probably won’t survive,” Roos said. “And I’ll probably have a miscarriage or a still birth. Or if I’m lucky enough to give birth to her, she might not live very long.”
“[…] I think I’m to the point where I hope to make it to full term, but I have to be realistic and realize that it’s probably not going to happen.”
But, as she tells a Dallas, Texas newspaper, she;s not giving up on her baby girl. Even with the odds stacked against her daughter, she is showing tremendous courage and a fighting spirit in the face of adversity.
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Roos found out after a 12-weeks genetic test that her unborn baby girl has full Trisomy 18, a chromosomal defect that causes the fetus to have severe developmental and physical complications that often prove fatal.
Girls have better rates of survival than boys. But fewer than 10 percent of babies with Trisomy 18 survive their first year — if they aren’t miscarried or stillborn.
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It’s because of these poor statistics that most doctors recommend terminating the pregnancy. So much so that Roos didn’t even realize there was another option during her darkest time the week after finding out.
But after doing her own research and getting in touch with other mothers of babies with Trisomy 18, she decided to keep her baby and see out whatever life the little girl might have.
“This isn’t a mistake,” Roos said. “There’s a higher purpose for this.”
Roos, her husband, Jonas Roos, and her 3-year-old son, Cameron, are taking this difficult time day by day. But she is also choosing to share this personal struggle with others, taking the platform provided for her as a state champion coach to raise awareness about Trisomy 18.
There is no cure for Trisomy 18 — no miracle medicine or procedure to set the chromosomal defect right — but Roos’ campaign isn’t about finding a fix. It’s about challenging the standard for quality of life and showing other mothers in her situation that there’s another option beyond “ending the story out of convenience,” she said.
Alison Stubing, 41, of Allen connected with Roos through a series of friends when she heard Roos faced the same choice she did three years ago. Stubing, Roos and the other mothers they’ve talked with through Facebook groups and other friends of friends realized having a baby with Trisomy 18 was very isolating — especially when they felt doctors only gave one side of the story.
Stubing also went against doctors’ recommendations, and her baby Quinn lived for six months. Stubing called the time with her baby joyous and delightful but also intense and often grief-filled.
“We got to know her, which was a blessing,” Stubing said. “She did change the world around her, even as a 6-month-old.”
Each woman’s choice stemmed from religious beliefs, but that doesn’t mean it was a black-and-white situation. Roos said she would never judge anyone who chose the other option. Stubing still wonders if what she did was right, even if she doesn’t regret it.
“It was very difficult to watch her suffer,” Stubing said of her baby, who struggled to gain weight. “Did I make the wrong decision for her? Was I just not brave enough to do that for her? I mean, there’s just such a flip side that people don’t think about.”
Despite all the potential heartbreaking outcomes, Roos said she is still remaining positive.
