Tricia Roos is one outstanding coach. In her 6 years coaching the girls’ varsity volleyball team at Bishop Lynch H.S. (Dallas, TX), they have been state champions 3 times, state finalists twice and semi-finalists once, racking up an overall record of 207 wins to 56 losses.
This season she faces the biggest challenge of her career, on or off the court. Her second child, Annebelle, due January 13, 2015, has been diagnosed with trisomy 18 (also known as Edwards syndrome)–a chromosomal disorder occurring in about 1 in 2,500 pregnancies. It is the second most common chromosomal disorder in the United States, after Down syndrome.
Medical complications of trisomy 18 are so severe that most babies die before or soon after birth. Fewer than 1 in 10 children survive to celebrate their first birthday, but some even reach their 20s or 30s.
Mrs. Roos’s doctors recommended abortion, as most do. But with her husband’s full support, she decided to “fight for my baby’s life and get through a hard situation.” She told a reporter that she hopes she “will be lucky enough to give birth to her” because she very much wants to be able to meet Annebelle. Big brother Cameron (age 3) has long wanted a baby sister, but understands now that his sister “is going to heaven.”
Rather than keeping her baby’s medical condition a secret, she chose to let people know and that has resulted in at least two wonderful outcomes—for her family and for her athletes: “I feel [that] if we had hidden it … or not had as many people praying for us or helping us, then we would have felt very lost and alone.” And, like a great coach and teacher, she has turned her personal sorrow into a lesson for her athletes: “I’m teaching these kids to fight and never give up. Why would I choose the easy road or to give up on something when my life is being challenged?”
Mary Kellett knows a lot about not giving up. She is the mother of 11 children, including Peter, her youngest. At 19 weeks’ gestation, a routine screening showed that Peter had some of the markers for trisomy 18, but they chose not to have the more invasive test to confirm the diagnosis because they had no intention of aborting him. Mary was told that no babies with trisomy 18 survived beyond two weeks and that most people aborted these babies.
After his birth by emergency C-section at 34 weeks, he was given excellent care until the second day of his life, when his trisomy 18 was confirmed. Doctors then recommended that no further care be given, “Just wrap him up in a blanket, and let him die,” they were told. She was warned that he’d lead a life of terrible pain and suffering, and would never know or respond to his family.
They took Peter home where he thrived for 6 ½ years, but each time he needed hospital care, they had to fight hospital personnel who wanted to put a “do not resuscitate” order on his chart. When Peter was a happy one-year-old, Mary was inspired to found Prenatal Partners for Life, which allows parents of children with newly-diagnosed special needs to receive support, advice and hope from experienced parents of children with the same condition. In an article she wrote for the U.S. Bishops’ Respect Life Program in 2007 (before Peter’s death), Mary explained:
Karen Garver Santorum, wife of former Senator and 2012 presidential candidate Rick Santorum, earned fame in her own right for her poignant and uplifting book, Letters to Gabriel. Their seventh child, Gabriel, underwent surgery in utero to correct a potentially fatal malformation, but a subsequent infection caused premature labor and he survived for only two hours after his birth. Their youngest child, Isabella (“Bella”) Maria Santorum—like Annebelle Roos and Peter Kellett—has trisomy 18. As with the other parents, doctors told the Santorums that babies with trisomy 18 usually live only a few hours or days. She “won’t be able to do much,” they were told. “She’ll never be normal” and they should just “let her go.” Bella garnered a lot of attention from the press in early 2012 when her dad left the campaign trail to be with Karen and Bella when she needed to be hospitalized for a few days. She is now five and the light of their lives. Their very public witness to the dignity and value of children with special needs has surely given hope to other parents and allowed other children to be cherished, rather than aborted.