When Jane’s daughter, Emmi, received a prenatal diagnosis of anencephaly – a fatal condition in which parts of the brain and skull fail to develop – during a 15-week ultrasound in March 2021, the experience was traumatic.
“I was alone and sitting with the medical team,” Jane told The Pillar.
“They confirmed that baby Emmi had anencephaly and said that she would not survive after birth - if she even made it that far.”
“It was as if a part of me had died right then and there,” she said. “The rest of that day, needless to say, was full of crying and weeping. It was the most painful thing my heart had ever felt. I fell asleep crying that evening.”
But in that painful experience, Jane says also encountered God’s love, in part through the support she received from Be Not Afraid, a Catholic non-profit organization supporting parents whose child has received a prenatal diagnosis.
Jane’s doctor offered her a list of resources that included Be Not Afraid (BNA). She connected with the organization, which helped her family “navigate a lot of those decisions we would have to make.”
Members of Be Not Afraid (BNA) offered Jane’s family resources, education, and even gifts unique to their situation.
“They were truly a God-send, showing us that we were not alone.”
Be Not Afraid was founded in 2008 by Tracy Winsor and Sandy Buck, both of whom had served in perinatal loss ministry at parishes in the Charlotte diocese. Winsor had a masters in public administration. Buck was an accountant. Neither had a background in medicine or counseling. But through their work in grief ministry, they saw a need that was not being filled.
Winsor told The Pillar about two families she and Buck encountered.
In the first instance, the pregnancy was terminated after a failed prenatal intervention - with support from a priest, Winsor said.
“The word abortion was not used in discussions, but was used on the hospital bill.”
“The second family hadn’t told anyone [about the diagnosis]. They didn’t know how to share the news and suddenly had a baby who had been given no hope. They had been told he would never be born alive and then he was.”
The newborn baby, who was very frail, was sent to the NICU. He lived a week or two.
The family had never considered the possibility of a live birth, Winsor said. They didn’t have a plan for what his care should look like or what options they would need to consider.
“We had a great loss ministry [at the parish] but then, here, we had two families who did not find what they needed,” she told The Pillar. “So we thought God must be calling us to find whatever these people needed.”
After another Catholic woman in their circle obtained an abortion, Winsor and Buck decided they wanted to help fill that gap. They put together a prenatal diagnosis pastoral care manual. Then they sought out medical referrals. In six months, they had their first referral.
“At that birth, a stillbirth, we lost the heartbeat at 32 weeks,” Winsor recalled. “We had been serving [the] mom for 13 weeks. The two of us were there at birth. We had a relationship with her. We were comfortable with sadness, but we were also comfortable with making a joke. There was some laughing. It was not a totally horrible night.”
At one point, Winsor went out to look for coffee, and one of the nurses approached her.
“The nurse stopped me and said, ‘I need your card. I just thought that woman had the best friends in the world’.”
Since that time, the ministry has grown to serve more than 300 families. It has moved from a parish ministry to receiving national referrals, welcoming families facing any kind of prenatal diagnosis.
The ministry has expanded so much that it has halted its acceptance of referrals for a few months, in order to train new peer ministers across the country.
BNA seeks to provide “a partner and a process” to support the range of physical and emotional needs of parents who choose to carry their child to term after a prenatal diagnosis, Winsor said.
Its members offer practical guidance – giving women information on what to expect throughout their pregnancy and delivery.
They support women by accompanying them to prenatal appointments - and the baby’s birth.
They help parents develop a written birth plan to ensure, for example, that their baby can be baptized immediately after birth.
They arrange for a photographer to capture the moments immediately following the baby’s birth, and for hand and foot molds to provide keepsakes for the family.
They provide bereavement support, funeral planning resources, and post-birth Facebook communities.
In all of their operations, BNA utilizes a “trauma-informed care” model, which makes an effort not to retraumatize the family or patient, Winsor explained.
“If you are the victim of the crime, you don’t have to go back to the scene of the crime. You have to be really conscientious of the things that made them have a fight-or-flight response.”
Receiving a prenatal diagnosis is a traumatic event for parents, she said. In fact, families report experiencing more trauma at the time of diagnosis than at delivery.
In pregnancy, trauma-informed care will help patients anticipate possible outcomes and find the areas in which they have some control over the situation, to find those areas in which they can make a choice, Winsor said. This sense of autonomy can mitigate the psychological impact of the trauma.
Following an initial diagnosis, doctors typically prescribe additional tests or ultrasounds. Care following diagnosis may be specialized. The woman may or may not attend prenatal appointments at the same facility. She may deliver at a specialized hospital where her child can receive medical care following delivery, but she will almost always deliver in a place where women of healthy children are delivering at the same time.
BNA helps families like Jane’s navigate these situations. Through case management, peer-to-peer support, and the development of a birth plan, BNA incorporates an awareness of the diagnosis into the patient’s care.
The support offered by BNA is individualized, in order to help families navigate the challenges specific to their particular situation.
In some cases, those challenges include responding to both overt and subtle pressures to abort the baby.
When a person experiences a traumatic event, it triggers the body’s fight-or-flight response, Winsor explained. As a result of this automatic physiological reaction, executive function is impaired, and it becomes more difficult to think through situations and make a well-formed decision.
Often, it is at the point of diagnosis, when the body has been thrown into this fight-or-flight state, that doctors first offer abortion as a solution to a prenatal condition, Winsor said. Women are vulnerable in these moments, and may be susceptible to pressure.
Some cases, such as anencephaly, can be particularly tricky. If a woman declines to consider abortion, doctors may then suggest early induction instead, as an alternative to carrying the pregnancy to term.
While this may seem like a welcome option to shorten the physical discomfort of the pregnancy and the sense of dread leading up to delivery, the Catholic Church actually views early induction as a type of abortion in cases when it is not being used to treat any pathology, but simply to end the pregnancy early.
Pro-life women who would never accept the idea of an abortion may not realize this distinction, especially while they are still processing the traumatic news of the diagnosis.
“The doctor opens up the exit door and says, ‘here’s the way out.’ They aren’t calling it abortion,” Winsor said.
She added that she has talked to multiple women who did not realize they were having an abortion by inducing before the baby reached full-term.
“I met someone who said she felt bamboozled. It’s the soft language,” she said. “It happens very quickly and is extremely blindsiding.”
Having support during the early days and weeks after a diagnosis is particularly important to help women process what they are experiencing and fully understand what they are choosing, she said.
Following her diagnosis, Jane said, her doctors told her they would “support her whatever she wanted to do.”
It was then that the thought of abortion first crossed her mind.
“I wasn’t even thinking that at the first news of everything,” she said. “To be given that option right then and there—I did for a very brief moment think, ‘Well yeah, what’s the point of carrying to term only to lose your baby?’”
“But my heart said, ‘Who are you to play God? You’re not the one to choose who gets to live and who will die’.”
In the months that followed, BNA supported her decision to continue the pregnancy. Members of the organization checked in with her by phone and then weekly by text. They walked her through different birth options, sharing observations from other clients who had gone through both vaginal deliveries and c-sections. They encouraged her as she searched for a doula, and developed a birth plan.
“They helped us tremendously with the funeral planning process- calling the funeral sites to compare prices. They sent care packages throughout my pregnancy and baby stuff that could be for when Emmi was born and/or memorabilia,” she said.
“They set me up with a postpartum bereavement team who checked in on me soon after Emmi left us and who texted every few weeks initially.”
“They really went above and beyond in making sure I was doing well and reminding me that I wasn't alone in this journey,” Jane said. “Each person I interacted with on the BNA team was so warm and understanding from the first day that I met each one.”
While BNA is a Catholic organization, it accepts families of any faith background or none at all.
At one point, as others outside their diocese sought BNA’s services, Winsor said, they approached Bishop Peter Jugis of Charlotte, where they were based, to ask about becoming a diocesan ministry.
“He responded, ‘I don’t think you want to do that. You’d have more flexibility in your evangelizing if you become a 501c3’.”
BNA does see evangelizing as part of its role, albeit in somewhat nontraditional ways.
“The families that we serve and the babies that we welcome - they change people’s perspectives,” Winsor said. “Sometimes you don’t always see it in real-time but sometimes you do.”
“There’s a certain way the medical community responds to a prenatal diagnosis. It’s just the way it’s done. We all have the potential to be creatures of habit. If you don’t have a really great moral Catholic reason to be thinking about what you’re doing, a lot of people think the best you can do for someone is to end one of these pregnancies quickly,” she continued.
Many medical professionals act as though the baby itself is the traumatic factor in cases of prenatal diagnosis, Winsor said. But BNA offers an entirely different perspective by recognizing that the diagnosis is the traumatic event – not the baby, who is a person worthy of love, no matter how short his or her life may be.
Medical professionals who are not Catholic or even pro-life have responded positively to the work of BNA, she said, because they see the positive effect the ministry has on parents as they navigate a very challenging and painful situation.
“We have had doctors who come out of the delivery room and cry and say that the birth plan was amazing.”
In some cases, medical professionals think carrying a baby to term will lead to a horrible event, she continued. These professionals encounter the option of a person choosing “to love their baby enough to give them time, or love their baby [enough] to accept their baby with a disability, however long that baby’s life will be.”
“We introduce them to sacrificial love.”
When Jane had a C-section at week 43, her doctors asked if she would like to have Emmi held up over the curtain immediately after she was born.
Jane said yes, even though she was apprehensive.
But as she met her daughter, she recalled, “it was like the biggest gush of love came over me. I didn't see her diagnosis. I fell in love with my baby.”
Winsor said one father who had been anxious about labor and delivery later told her that the experience was like being “on retreat.”
“There’s a thing there that’s tangible,” she reflected. “There is a certain holiness where it feels like the place where God would be.”