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It is heartbreaking. Google “Anencephaly” and you’ll get all varieties of cold, clinical websites. “Anencephaly is the absence of a large part of the brain and the skull.” It “is a cephalic disorder that results from a neural tube defect that occurs when the cephalic [head] end of the neural tube fails to close.”
We do this. We get a diagnosis and we go online.
Add “choices” to your search and you will come upon an unwelcoming site, “The Heartbreaking Choice,” “for parents who have made the decision to end a much-wanted pregnancy due to severe or lethal birth defects.” It’s not a website for “support” if you haven’t yet decided to end your pregnancy. It makes that clear. It’s for the “grieving.” (Which does suggest there is something to grieve.)
Knowing this, Monica Rafie established the website Benotafraid.net. If you are a scared parent who has just returned from a doctor’s visit that brought bad news about your unborn child and log onto your computer and search for “anencephaly,” she wants you to have alternatives. She wants you to know that other parents have been at the point you are. She wants you to know that you can face your pregnancy. And if your doctor won’t help you, she’ll help you find a doctor. Even if you’re in England, she’ll try.
Rafie, you see, has been there. She and her husband were told that her daughter would be “incompatible with life.” Today she is a “vibrant” second-grader preparing for her First Communion. It took “grace and a series of surgeries,” but her daughter is alive at eight years old, quite compatible with life and a blessing to her family, despite her initial prognosis. There’s “a whole group of parents that need to be reached out to,” Rafie says. And so she tries.
After getting her unborn child’s diagnosis, Colleen writes, “I spent most of the next day in bed. I would cry awhile, then go to the computer to do a little research, then crawl back in bed and cry some more at all the scary stories and images I’d seen. Children in wheelchairs. Catheters. Surgeries. It was so unfair — this only happens to one in 1,000 babies, so why did it have to happen to my baby?”
But she made peace with it. And she now writes: “I can’t even put into words how much joy Nate brings into my life. He amazes me daily with what he can do. . . . [I tell people:] ‘He has spina bifida, and look what he can do!’ I’m so proud of him.”
Colleen’s story appears on Rafie’s site, which was established in October 2002, to offer, as Rafie puts it, “hope and help.” This 40-year-old mother of five works on the site in her spare time — between naps and feedings, as she raises her five children. As it describes itself, it “is a network of concerned parents, professionals, and laypersons who have experienced and/or worked closely with issues surrounding poor prenatal diagnoses.” It’s where “families share how they worked through the same conversation.”
While I talked with Monica recently, another young mother was being tugged on gently by her lively toddler, a universal sign for “More! I want more!” Her daughter wasn’t supposed to live either. But with support and resources and faith, she did it.
Rafie believes that “there is a shift that is becoming more palpable.” With enthusiasm and gratitude she says that when former Alaska governor Sarah Palin walked onto the national political scene during the 2008 presidential election, “it was Trig Palin many of us were excited about.” Palin’s son, who has Down Syndrome, “galvanized” families that live with Down Syndrome. “The electricity” is still bearing fruit, Rafie explains.
Rafie’s comments track with what Palin writes in her book, Going Rogue. Of one rally in Pensacola, Fla., she writes: “Up in the stands, I spotted a group of 15 kids with Down syndrome wearing shirts that said, we love trig! and trig in the white house. I thought, Wow! How great that these precious people have someone associated with a national campaign that they can identify with.”
It was a cultural moment that gave birth to more. Focus on the Family plans to run a controversial ad during the Super Bowl this month. It star University of Florida football star Tim Tebow. In 30 seconds, it tells the story of how Tebow wasn’t supposed to be born. His parents were missionaries in the Philippines, and doctors advised the ailing Pam Tebow not to have Tim, her fifth child. Well, she did. And it worked out.
Of course, choosing life does not guarantee a long life — the story won’t always end with a happy second-grader or football star. But, as Rafie counsels, in an authoritatively motherly way: “The baby who could die anyway has the same dignity as any other baby.”
Monica Rafie has added heart to Diagnosis-Day Googling. Benotafraid.net is a warm, welcoming embrace to the scared parent. It is a warm, welcoming embrace to human life. It’s the nudge to get a second opinion if your doctor won’t help you. It’s a rose in a thorn bush, opening hearts up to a beautiful blossoming of life in your child and love in your heart and home.
But Rafie knows that her humble site can save only so many lives, it can help only so many moms and dads. “The time has come to engage the culture,” she says. In politics, during the Super Bowl, even during primetime dramas, it is happening. And, as if raising five kids as a stay-at-home mother isn’t a full-time job, Rafie does her part, helping to make a heartbreaking choice an actual choice.
– Kathryn Jean Lopez is editor-at-large of NRO. Copyright 2009, Kathryn Jean Lopez. Distributed by Newspaper Enterprise Assn.