Run a Web search on "anencephaly" and you'll get all varieties of cold, clinical Web sites. "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."
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 pregnancy due to severe or lethal birth defects." It's not a Web site for "support" if you haven't yet decided to end your pregnancy. It makes that clear. It's for "grieving."
As a counterpoint, Monica Rafie established the Web site Benotafraid.net. If you are a scared parent who has just returned from hearing a doctor's bad news about your unborn child, Rafie wants you to have alternatives. She wants you to know that other parents have been at the same point as you, and that if your doctor won't support you, she'll help you find a new one. Rafie has been there herself. She and her husband were told that their daughter would be "incompatible with life." Today that child is a "vibrant" second-grader preparing for her first Communion. It took "grace and a series of surgeries" but her daughter is alive at 8 years old, quite compatible with life and a blessing to her family.
A mother named Colleen writes on Rafie's site of the fear she faced, after receiving a distressing diagnosis for her unborn child: "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." Colleen didn't give in, and she now has a lovely son: "I can't even put into words how much joy Nate brings into my life. He amazes me daily with what he can do."
Rafie, a 40-year-old mother of five, works on her site in her spare time. Since 2002, it has served as 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."
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