For more than a decade, the organization Be Not Afraid (BNA) has been serving the parents of children who receive a life-limiting prenatal diagnosis by providing them with comprehensive case management. But after facing their own personal health diagnoses, the organization’s founders, Tracy Winsor and Sandy Buck, saw the need to add a new service to BNA.
In 2022, they created a national training program to ensure a growing national pro-life response to prenatal diagnosis.
Giving families a life-affirming option
Winsor explained that, following a prenatal diagnosis of a life-limiting condition, 88% of moms and 83% of dads experience the prenatal diagnosis as a traumatic event. Trauma can result in a flight mode and it also impacts executive function.
Trauma makes parents vulnerable to directive counseling. During this time, they are “very subject to directive counseling.” Unfortunately, that is often counseling towards abortion as the best option or their only option.
While perinatal hospice is available for some parents who choose to carry to term following a life-limiting diagnosis for their child, Winsor explained that most of those programs are not pro-life. The hospitals they are associated with are often the institutions that are carrying out the abortions on children who receive a diagnosis, Winsor says, and they are failing to provide informed consent to the parents regarding the outcomes of abortion versus carrying to term.
PerinatalHospice.org explained, “[T]here is no research to support the popular assumption that terminating a pregnancy with fetal anomalies is easier on the mother psychologically.” On the contrary, research has shown that carrying a child to term following a life-limiting diagnosis is beneficial for the mental health of the parents, specifically the mother.
A study in the journal Prenatal Diagnosis stated, “Women who terminated [following prenatal diagnosis] reported significantly more despair, avoidance, and depression than women who continued the pregnancy.” It also noted that there “appears to be a psychological benefit to women to continue the pregnancy…”
Parents who carry to term report being emotionally prepared for their child’s birth and possible death, and share that they felt “a sense of gratitude and peace surrounding the brief life of their child.”
In addition, a study of 405 parents who carried to term showed that 97.5% did not regret the decision.
“We know that prenatal diagnosis continues to be an area that the pro-choice community goes to to try and assert the need for abortion, and in particular late-term abortion as we’ve seen in recent news stories and online,” said Winsor. “There’s a lot of stories popping up via video of women with a prenatal diagnosis who are alleging that Roe being overturned impacted their ability to get the abortion that they felt strongly that they needed to prevent their baby’s suffering. … We really need to have a good response. We need to acknowledge, I think, in the pro-life community, that nobody’s going to do the heavy lifting for us. Our need to respond to parents is going to be based on what we do and not what we can trust the medical community to do.”
Expanding into a training program due to high demand
Since most doctors weren’t providing the resources to help babies survive, BNA was created to assist parents who choose life following a diagnosis in their efforts to care for their baby. The organization provides a service of trauma-informed care that provides connection, support in navigating the uncharted path before parents, facilitates parent experiences of agency, and communicates belonging for baby. Winsor told Live Action News that during the COVID-19 pandemic, referrals to BNA “went through the roof.”
The organization, based in North Carolina since its launch in 2008, was challenged to find the right referrals for families in distant states like California. Parents who were refusing abortion following a prenatal diagnosis needed support regardless of their state of residence, and Winsor and Buck determined that the best way to ensure this was to begin training other organizations to provide the services that BNA had been providing.
“We were overwhelmed with the number of parents that we had. … We were serving up to 70 parents a year,” explained Winsor.
Six years ago, Buck was diagnosed with multiple myeloma, and then, amid their effort to develop the training program, Winsor was diagnosed with metastatic breast cancer.
“It became even more clear that if what we had built was going to survive, we had to train other people,” she said.
In their research, Buck and Winsor found that when a child is diagnosed shortly after birth with a life-limiting condition, he or she is more likely to survive than a child who is diagnosed with the same condition during pregnancy.
The reason is that the parents of children diagnosed in the womb — if they choose life — are often sold the comfort care approach by doctors, which involves helping the child to remain comfortable while waiting for him to die, rather than actively helping him to survive. Children diagnosed after birth, however, are stabilized and evaluated. They are treated like any other baby until a formal diagnosis is made and that trial of care can make the difference between life and death for some babies.
BNA was filling in the gaps to help the parents who received a prenatal diagnosis and chose life, so they could be empowered to get the care their children needed to survive. But with more referrals coming in, BNA couldn’t keep up with the demand for their services.
“We suspected, when we began searching for organizations, that we would find supporters. And so we’ve been collaborating with Heartbeat International, the Charlotte Lozier Institute, and Her Plan in a two-pronged approach,” said Winsor. “One was for Be Not Afraid to create training so that we could support BNA-modeled service development. The other thing is that there is a new website. It’s the first pro-life prenatal diagnosis website and it provides a lot of information. It talks about trauma as part of prenatal diagnosis. It talks about a broad range of diagnoses. So all that information is there — but most importantly, the website provides parents an opportunity to connect with Option Line, and then Option Line in turn refers them to BNA-trained parent care coordinators.”
Winsor added, “There are now nine organizations that we’ve trained and six organizations involved in training, but we. need more.”
The parent care coordinators would ideally be located in each state, said Winsor, but as of now, they are handling cases on a regional basis. Currently, when a family is referred to the BNA website or the prenatal diagnosis website, they are connected to a parent care coordinator within 24 to 48 hours. That coordinator will provide them with support in a trauma-informed approach to help them process the information that has been given to them, and then serve them as they carry to term and after the birth of their child.
The trained parent care coordinator continues working with the parents for a year after the child’s birth, whether assisting with continued care for the baby, helping the parents to cope, or helping with funeral arrangements.
A year ago, BNA employed two parent coordinators. Today, because of the BNA Parent Care Coordinator Training there are 12 and counting, including nurses and a retired OB/GYN. BNA is working with pregnancy resource centers, Catholic archdioceses, and other groups to train more parent care coordinators.
Empowering parents to communicate effectively with their medical team
Winsor explained that parents who have worked with BNA have been able to improve their communications with their child’s medical team and ask for the care they want for their child — whether that’s advocating for surgery for their child or having a priest come to bless the child immediately after birth.
“The medical community is flexible,” said Winsor, “if parents can articulate calmly what they want.”
Winsor hopes that the new website — PrenatalDiagnosis.org — will be one of the first sites parents land on when they search online for information about their child’s diagnosis.
“We could have walked away [after our own personal health diagnoses] but we thought, ‘I think we need to spend a little bit more time — of what is the precious time that we probably have — making certain that somebody else is doing this work and that they’re doing it really well,” said Winsor. “So it’s very heartfelt for us both to look at what we’ve been able to do and what we hope we can continue doing as we find additional organizations to train.”
BNA is offering a summer discount to pro-life organizations seeking to train staff or volunteers to become parent care coordinators.
