Be Not Afraid!
Even if the doctors say your baby has a problem …

What do you do when the doctor says, "I’m sorry, but your baby will be born with spina bifida?" Or maybe a significant heart defect. Or maybe retarded. A case in England (see the box on the right) is an example. Do you abort? Not abort? How do you collect information to decide what to do?

There’s a new website you might want to know about, called "Be Not Afraid." (www.benotafraid.net) It’s by and for parents who have received a "poor prenatal diagnosis." That means the parents have been told that the unborn baby has a serious health problem, in some cases even signifying the death of the infant within hours of birth.

Sometimes the parents were shocked to realize that the medical personnel assumed that the parents would want an abortion. In some cases the recommendations were, to be very polite, quite insistent.

So if the doctors are biased, where do you go? This website tells the stories of parents who said, "No, no abortion. I will love this child for as long as God chooses to leave him with me." Rather unsettling is the fact that in some cases the child was born perfectly healthy. They would have aborted a child for a mistaken diagnosis.

RARTL spoke via e-mail with Monica Rafie, who might be called the "prime mover" of "Be Not Afraid," and here’s what she said.

Q: What happened to convince you of the need for this website? Was there an incident that you saw or was it a gradually increasing conviction that this kind of information should be published?

A: Really, it was a convergence of several things. The parents involved in this project all have their own remarkable unique reasons for participating -- and many of them are advocates for their children with special needs. This is especially true in the case of moms to children with Down Syndrome facing issues of inclusion and misinformation about their children every single day.

In my case, I sort of slid into this area of outreach -- providentially, perhaps. When I married and became a stay at home mom, I had to cut back on my pro-life outreach. I discovered, along with many, many other stay-at-home-mom pro-life women, that there was a real need for online outreach. There are lots of message boards out there where women post because they are considering abortion. Eventually, I came upon message boards for women who terminated because of a poor prenatal diagnoses. Well, you can't direct a woman who has been to a high-risk obstetrician, a geneticist, and a specialist to a crisis pregnancy center. For what? They have already been "counseled". As wonderful as CPC's are (and I used to counsel at one), they simply aren't able to provide the appropriate type of outreach to women who have received a poor prenatal diagnosis. It's just a whole different level of concerns.

Then, I received my own poor prenatal diagnosis. My daughter was diagnosed with a very serious set of heart defects. I have read that nearly 75% will abort with this diagnosis of heart defects -- although I haven't been able to confirm that statistic. IT was certainly an option offered to us early on. There are surgeries available for babies with this diagnosis, but there are many unanswerable questions too; how long will these children live?, will they need heart transplants, etc? I have encountered several women on line who simply did not want to gamble with the unknowns, and so they aborted. My heart sinks every time I hear of it, because I know what they gave up.

With my daughter's situation, my own experience, I suppose I felt more confident reaching out to women facing a poor diagnosis. I saw that there were online support sites for women who had terminated because of diagnoses as well as support sites for women who had already carried to term -- but I didn't see anything directed specifically to those who were in the process of making a decision. I knew from reading and sharing stories with others that women were not getting the full picture with regard to their options. They will learn that they can terminate, but not, for example, that a poor prenatal diagnosis won't shield them from post-abortion syndrome. They may not learn that it really is "okay" to carry to term -- they can be made to feel fanatical or crazy for carrying to term.

In one case I read that a doctor kicked a woman out of his office and told her to find another doctor when she refused to abort because of a spina bifida diagnosis. This doctor was appalled that his patient would bring a baby "like that" into the world when she could "prevent" it.

There is such a need to expose parents to the other side of the coin -- that is, that carrying to term truly does provide the best possible response to a poor prenatal diagnosis -- and they are free to "choose" it. They have a right to know that even if the outcome is going to be difficult to take, perhaps the baby is going to die, that they can still make something good of the situation -- they have an opportunity to love their child and welcome their child into the world just as they would their other healthy children.

Q: How did you find your initial group of stories?

A: I was fortunate enough to have a group of online friends who had their own diagnoses -- and that was my starting point. They knew someone who knew someone. I also tried placing notices in some area parish bulletins -- but that didn't turn out to be terribly productive. Another avenue was to notify pro-life ob/gyn's about the project with a request to pass along my contact info to any former patients who might be interested in this type of outreach. In other cases, I found stories on the Internet and had to go out on a limb by contacting the families and feel around regarding their pro-life stance. I had some bitter disappointments doing that -- and then on the other hand, some of the best stories came to me that way.

Q: The "About Us" on the website talks about "we." How many of you are there?

A: Some of "us" don't have a story on the site, but are already involved in this type of outreach. Some only want to share their stories, and aren't yet interested in being contacted by parents in distress. So, considering only those who are expressly interested in interacting with parents -- especially those who will post on the site's message board, there are probably 15 of us representing about 5 diagnoses. I believe this number will increase as knowledge of the project increases.

Q: Are you the prime mover of this website?

Well -- I had the opportunity and the desire to produce it, so in some ways I'm the prime mover. But, from the beginning, I wanted the project to "belong" to a network of parents who are interested in this specific type of outreach. Practically speaking, I decide what articles to place, but other parents help me find the best, reliable resources -- as well as other stories. In the future we will add a section regarding adoption of "special needs" kids -- and, since that is something I have no experience with, I will be truly relying on the other parents to take over that aspect.

Q: Thank you Monica.

The "Be Not Afraid" philosophy is carried on the website, in a nutshell. It says,

"Why are we "concerned"? Often, parents are given a poor prenatal diagnosis and are then left with making the decision to either terminate or proceed with the pregnancy. In some cases, parents are not given adequate information to make truly informed choices. When the diagnosis involves fatal defects, parents can be made to feel that continuing with the pregnancy is not a legitimate option open to them. Occasionally, parents have reported feeling that they were expected to terminate. We hope that in offering our stories and outcomes, we can show that carrying to term, regardless of the diagnosis, remains a legitimate option. Many of us have already lived through (and live with) the variety of experiences that some expecting parents fear most. Although our stories represent a variety of outcomes, we believe that choosing to carry our babies to term was the best possible response to our poor prenatal diagnoses. If there is one thing we want to express to parents who are facing difficult decisions, it is simply this . . . be not afraid."

 SPUC source: a bulletin is privately circulated by the Society for the Protection of Unborn Children, 5-6 St Matthew Street, London, United Kingdom, SW1P 2JT, +44 20 7222 5845. The reliability of the news herein depends on that of the cited sources, which are paraphrased rather than quoted. Opinions expressed are not necessarily those of the society. Copyright SPUC 2002.]