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Walking With Families Through The Toughest Times A Parent Can Face

Tracy Winsor, co-founder of Be Not Afraid, a ministry that provides tangible and loving support to parents whose unborn children receive difficult diagnoses and who still commit to carrying their children to term discusses the inspiration for the ministry and practical advice for parents who receive an unexpected prenatal diagnosis for their child.

Tracy Winsor discusses families with a prenatal diagnosis


Family Policy Matters
Transcript: Walking With Families Through The Toughest Times A Parent Can Face

THOMAS GRAHAM: Thank you for joining us for this week’s special Focus on Faith edition of Family Policy Matters. Today, I am pleased to be joined by a remarkable lady whose unique mission is to walk with families through some of the toughest times a parent can face.

Tracy Winsor is the co-founder and Administrative Coordinator of Be Not Afraid, a beautiful ministry headquartered right here in North Carolina that provides tangible and loving support to parents whose unborn children receive difficult diagnoses and who still commit to carrying their children to term. After starting in western North Carolina, Be Not Afraid is now a national ministry serving families in all 50 states.

Tracy Winsor, welcome to Family Policy Matters! It’s great to have you on the show today!

TRACY WINSOR: Thank you.

THOMAS GRAHAM: Tracy, on this show, we are all about personal stories, and I know you have spent your life walking alongside so many people through, what may be, the most difficult portion of their personal story. But please, what is your story? How did you become a woman who embraces that walk, day after day, family after family? Would you share with us a bit of your life history?

TRACY WINSOR: My life history, relative to my work with Be Not Afraid, is really very simple in the sense that I’m just a mother who, in addition to six surviving children, had two losses. So I lost two babies early in pregnancy, my Thomas and my Gabriel, and somehow or another God used that experience to create a ministry to help other people: that ministry being Be Not Afraid. Prior to co-founding Be Not Afraid, my life history included a lot of other professional pursuits, and volunteering in the community and at church that provided service to others. So, I’ve been very fortunate and I’ve always valued the experience of helping others from my proficiencies. Like most people, I enjoy being successful and feeling one way or another that God used my gift and my talents to help others, and I’ve brought that skillset to my work with Be Not Afraid. But I think it’s really important to note why this work is so different again in terms of my life history. I can share a story that was instructive to me and maybe will be instructive for your listeners too in terms of how my work at Be Not Afraid is different. Early on in this ministry, I was providing a program for a group of labor and delivery nurses regarding what Be Not Afraid offers to parents, […] and toward the end, one of the nurses raised her hand and she said something like, “You know clinically, I’m really a very proficient and sensitive nurse. So, I know I do a good job for the parents I care for when they lose a baby. And in that case, what do you offer that I’m not already doing?” And for just a minute, I panicked a second. And then I thought, “Gosh, that’s a great question! What’s the answer? How am I better than her?” And then, I suddenly had the answer, which was stark but in the context of Be Not Afraid, very true. And I said, “When I hold a mother’s dead baby, she knows I’ve held my own.” And those words were heavy in that room, but it also made me realize for the first time how different my work—my Be Not Afraid work—was from anything else I’d ever done before, and that my core value in this ministry is not associated with my strength, but rather the sad fact that I had these two precious and beloved babies that I couldn’t save, and that when God, as I’ve said, somehow or another used that experience to create a ministry to help other people, He brought from that most painful poverty of my life, the most meaningful and really the most accomplished work I’ve every had, and maybe I will ever have.

THOMAS GRAHAM: Tracy, I want to ask you about the unique and beautifully life-affirming mission of Be Not Afraid, but maybe you could answer that by telling what led you and your co-founder Sandy Buck to found Be Not Afraid?

TRACY WINSOR: The story is this: Sandy Buck and I, after our own losses, had found work in the church providing parish-based bereavement ministry to parents who had experienced losses. And in the course of doing that work, we had what we now refer to as the “Year of our two Aidens.” We had two families, two different pregnancies, both complicated with a pre-natal diagnosis and both babies were Aidens. And the first family had a condition wherein the kidneys don’t develop and as a result, these babies are challenged in terms of lung development. She had tried a medical intervention prenatally and it was unsuccessful; abortion was offered; she sought a clergy consultation and as advised that, since her baby was going to die anyway, probably terminating the pregnancy was okay. But at some point, she kind of cracked open with her story and we recognized that she hadn’t really gotten the best information; she hadn’t really understood the option of carrying to term; and within her church community there’d been no support for that option. So that was our first Aiden. The second Aiden was born unexpectedly within our parish community. His family was well known in the parish. They had received devastating news regarding the fact that he had multiple disabilities, and because it was so devastating they hadn’t told anyone. They didn’t really know how to share the news in such a way and they kind of white-knuckled it through the pregnancy, and suddenly he was born and frail and in NICU and that’s was the first time anyone realized that there was an issue. So we were able to support that family through A­iden’s brief life—the second Aiden’s brief life. But we got to the end of those two things and we thought, “Gosh, here are two sets of people, very active in the church, and neither found what they needed.” So we started looking, because at that point, we didn’t really think that we were the answer but we thought there must be some answer. We found a medical model with care called perinatal hospice, but we walked out of that realizing that organization had a different piece of this, but nobody had a comprehensive approach to how you support families in this experience. So we looked at each other and we said, “Oh my gosh, what if God wants us to do this?” And so here we are. It’s been about 120 babies that we’ve welcomed later, and we’ve sistered Be Not Afraid-model services in other places across the country.

THOMAS GRAHAM: I would like, Tracy, for you to talk a little bit about the medical side of your work at Be Not Afraid. For example, when do you actually come onto the scene, and what have parents generally been told by the time they and you find each other?

TRACY WINSOR: Parents are referred to us, generally, shortly after they receive a diagnosis. So for most of our families, that’s going to be sometime between 17 and 20 weeks gestation. Occasionally, we will get parents earlier. In fact this week, we’ve had two moms referred to us at roughly 13 weeks gestation. So in North Carolina, most of our referrals come from the medical community (the genetics counselors, obstetricians, and others) who refer parents directly for our support. Nationally, most of our referrals come by word of mouth. As for what parents have been told, it continues to be really shocking to me. Although the numbers are staggering, 80 percent of parents who get a prenatal diagnosis will terminate the pregnancy. The interesting thing for Christians and pro-lifers to realize is that, when offered a service of support like we provide at Be Not Afraid, 80 percent will carry to term. So, it’s always clear that parents experiencing a prenatal diagnosis do in fact want a better option. And in fact you can make the medical case for carrying to term being the better option than terminating for a number of reasons, but it’s also still not the information that parents get. So when parent come to us, I would say most lack some level of informed consent for the testing they have received. And often we see that a screening test has been presented as diagnostic. So they maybe say, “I’ve been told that my baby has…” when in fact they should have been told that there’s a possibility that their baby has that kind of thing. It is very common if there’s a diagnosis that they’ve got the most negative perspective of what that diagnosis might mean. All have been offered abortion at least once over the course of the diagnosis and often they’re offered abortion multiple times and by multiple providers. And lastly, most parents who come to us have already made the decision to carry to term, and virtually all of them have been led to believe that if they carry to term their baby will not survive to a term birth, which is actually not what we find. Most of our families in fact do have a term birth, and most of our families ultimately, they have a live birth, which means they may get 15-20 minutes of life. But for families carrying to term, the possibility of holding a baby for even just that brief time alive is such a gift.

THOMAS GRAHAM: Right. Tracy. What would you say right now to any mother or father who is listening to this radio show, what would you say to them who perhaps have just received an unexpected prenatal diagnosis for their child?

TRACY WINSOR: First and foremost I would say, “I am so sorry, I am so sorry this is happening to you.” Because one of the things that we often find is that, within the medical community, parents leave the diagnosis with the sense that they’ve had a medical crisis, but not that they’re bereaved. The importance of acknowledging the bereavement is that, when you work in other bereavement with spouses who lose a spouse, or parents who lose an adult child, we always caution the bereaved not to make any major life decisions. Because it’s so possible when you are bereaved to make a decision that, long-term, is not the right decision for you. We even say, for instance, that if a wife loses a husband, “Maybe, take a year before you make a major decision and don’t rush to do anything.” But with these families who receive a prenatal diagnosis, often the option to terminate the pregnancy is offered at the ultrasound where they’re first getting the news that there appear to be markers or indications that something’s wrong. So first and foremost, “I’m so sorry this is happening to you.” And secondly, I suggest they not rush, not allow themselves to be rushed into making a decision or into further testing. As I’ve said, I think it’s really important that parents get good information, balanced information, because I can almost guarantee that parents experiencing a prenatal diagnosis are getting information that is at least subtly focused on the uptake of testing, as well as the uptake of abortion. Obviously, abortion is not good. But sometimes, the uptake of testing may not be advantageous to parents. I also think that parents who decide to carry to term—so let’s say parents have a diagnosis and they know they’re going to carry to term, so they proceed. Maybe they don’t need support from an organization like ours. They still need to understand that the medical community, who finds it completely acceptable to abort a child with a particular prenatal diagnosis, may not be prepared to offer the care they might want for that same child at birth if in fact, they decide to move forward with extraordinary care or sometimes even basic care. And so parents’ experience in a prenatal diagnosis have to not only navigate the experience of the diagnosis and the experience of carrying to term but many need to be ready to navigate what can be a challenging, and maybe even an unsupportive, neonatal environment for the baby who lives. So again, to the parents with a new diagnosis I would say, reach out. We’re here for you and ultimately, if you decide you don’t want support, we can offer some suggestions for other resources that you may want to secure. But I do think reaching out is a good idea.

THOMAS GRAHAM: Tracy, that sounds like extremely good wisdom and wise counsel to offer. So, let’s close out this radio show today by answering the question, where can our listeners go to learn more about Be Not Afraid?

TRACY WINSOR: Our website is benotaftaid.net, all lowercase and run together. And on the homepage, there is a parents’ support button so parents can refer themselves easily, or if someone else wants to refer parents. And just so your listeners know, we usually start—we initiate that referral, we make contact—within 24 hours and we set up a time to talk. We basically let mom and dad, or mom, whoever gets on the phone, tell us what their diagnosis story is; we identify if there’s any information regarding testing that they need to know, or testing that might be considered; or whether they’ve got an idea if a screening test is diagnostic, or whatever. We may also offer some information about bereavement, in particular, how moms and dads grieve differently. And we make some other general suggestions for them of things to consider. We follow up that phone call with an email with resources. And we say to parents at that point, there’s a lot you cannot control about a prenatal diagnosis, but one thing you have control over is whether or not you want our support. We give parents time to think about whether they want us around.

THOMAS GRAHAM: That’s wonderful, Tracy. Thank you so very much. I regret to say that we’re out of time for our interview this afternoon, but I want to say thank you much for being with us on Family Policy Matters today and for all your life-affirming and loving work with Be Not Afraid. God bless you Tracy. Thank you so much.

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