When pregnant with Celine, “I started going on pregnancy message boards and noticed women talking about terminating once they got a bad amnio report,” she says, referring to amniocentesis, the surgical withdrawal of amniotic fluid that reveals genetic disorders.
However, “there is a possibility you can make a wrong diagnosis,” Dr. Calhoun says, adding the 5 percent of maternal blood tests for Down syndrome can be “false positives,” meaning the child may be at risk but not have the defect.
“If the chromosomal analysis is done badly, people who get the blood work for the risk of Down’s may get a positive screening, have an abortion but the baby was normal,” he adds.
Now the mother of five, Mrs. Rafie lists common birth defects on her site — ranging from anencephaly, congenital diaphragmatic hernia, Down syndrome, spina bifida, skeletal dysplasia to Trisomy 13 and Trisomy 18 — and stories of families who allowed these handicapped children to be born. She also has four stories under a “misdiagnosed” category of women who resisted the advice of their doctors to abort, only to deliver a healthy child.
She says most women with problem pregnancies quickly become discouraged and overwhelmed. “People hear these callous, insensitive remarks, things like ‘Why do you want to carry a baby like this?’ or ‘Are you religious or something?’” she says. “The genetics counselors uniformly will hand out support information that assumes you’ll terminate.”
Telling their stories
Some women are fighting back, she says. “They’re moms with a holy fire … We feel this is part of our mission. We’ve been through this and have the credibility.”
Among them is Myah Walker, a 23-year-old Canadian from Moncton, New Brunswick, whose daughter, Faith, was born Feb. 19 with anencephaly, or no brain. Her story, posted at http://babyfaithhope.blogspot.com, is replete with Scripture quotes and photos of a tiny girl with a woolen cap on her head.
Because the child coos, cries, sucks milk, can lift her head and reacts to the presence of people, amazed doctors ordered a CT scan to insure that indeed, she is missing much of her brain.
“They have no explanation as to how Faith is even alive and breathing, let alone functioning on a conscious level,” Miss Walker wrote. “It may seem like all doom and gloom if you get this diagnosis, but trust me,” she added, “there is more hope and joy in store than you could ever imagine.”
However on April 21, she removed her e-mail from the blog.
“I have been getting a slew of hate mail recently,” she wrote. “I don’t understand why these people are attacking me. I don’t know how people can be so full of hatred for a mother and her baby.”
The popular culture favors abortion, says Madeline Nugent, a Rhode Island Catholic who came across a popular book distributed by many obstetricians to women with dire prenatal diagnoses.
“Except for a couple of pages, the book was all about terminating your pregnancy,” she says. Most hospitals encourage the mother to induce the pregnancy at about 20 weeks, causing the pre-viable child to die.
In response, last year she published “My Child, My Gift,” a book she is trying to get into the hands of hospitals and geneticists.