“It was a beautiful autumn day in Glenwood, Iowa, when I received the phone call that turned my world upside down. The words Edwards Syndrome and Trisomy 18 hung over me in dark clouds, obscuring my ability to think clearly. The polite yet clinical voice on the other end of the phone spoke of genetic anomalies, severe difficulties and delays, likely meaning the baby I felt squirming inside my belly would not make it to birth. If she did, her life would almost certainly be brief.
As my phone conversation ended, I was overcome by emotion yet numb at the same time….I could not have possibly known what lay ahead: the mental and emotional anguish; the uncertainty, fear, and anger; or—astonishingly—the unexpected, amazing love and joy, the beautiful surprises that met us along the way. All I could see in that moment was a giant, tangled mess. All I could feel was an overwhelming sense of dread.”
Why is this? Why do we meet news of this nature with fear, anxiety, and sorrow? Certainly it’s understandable. Something is “wrong” with our baby, and so we grieve, withdraw, search for something–anything–that will make it better…or make it all go away.
As we know, an adverse prenatal diagnosis greatly increases the risk of abortion. Studies have shown as many as 80% of parents who receive a life-limiting diagnosis for their babies will choose to abort. With many physicians personally believing abortion is acceptable in these circumstances, it’s easy to see why parents, leaning on doctors’ recommendations, proceed to the “logical” next step of ending the pregnancy.
However, there is good news! When offered perinatal hospice support, a high percentage of parents in these situations will instead choose to carry to term. The key, then, is support–and we have found that even a little bit can go a long way toward encouraging families to choose life over abortion.
Providing support to a mother receiving an adverse diagnosis for her baby gives opportunities to change the narrative surrounding genetic anomalies. Our goal is to help parents move from heartache toward hope. To do that, we need to be purposeful, helping parents navigate the narratives they will encounter on this un-asked for journey. Let’s examine 3 of the most basic narratives parents wrestle with following a life-limiting prenatal diagnosis. We will then take a deeper dive into how we can work together to change these narratives.
Narrative #1: Genetic anomalies are scary. The understandable reaction following a baby’s life-limiting condition is fear. It is the giant hill first encountered on the emotional roller coaster that defines your life for a season following diagnosis, and it plays into each of these narratives. How do we navigate it? We start by engaging with the mother in an empathetic, authentic way. Often the diagnosis is not only completely unexpected, but also entirely unfamiliar. Moms hear clinical terms and names of syndromes utterly foreign to them. It is quite possible they do not have a personal connection with anyone who has gone through this journey. They feel isolated and alone, which only magnifies their ever-growing fear. In the confusion, moms often turn to “Dr. Google,” searching for more specific information about the diagnosis and unfortunately often finding only disheartening statistics, horrific images, and dispassionate medical-ese, all of which add to their fears.
In a sense, these emotions are very similar to any other client you’ve worked with who has faced an unexpected pregnancy! Thus, many of the tools and methods of communication you already use in your ministry are certainly appropriate in the case of prenatal diagnosis as well. While it is helpful to have specific resources available to help answer medical questions Mom might have, in the beginning, too much technical information is actually overwhelming.
An important first step is to “weep with those who weep,” to listen, and to assure Mom that no matter what happens, she does not have to do this alone. Your very presence in her life during this time of crisis matters. Many moms share their grief over a loss (temporary or otherwise) of connections during this time: the people they were counting on quietly withdraw or go “radio silent” because they don’t know what to do or say. This only adds to the feelings of isolation and despair. Helping Mom connect with others, whether locally or through other support groups such as the ones Verity’s Village offers, is a vital step toward helping her move from heartache to hope. Changing the first narrative, then, can be as simple as this: Genetic anomalies are scary…AND you don’t have to do this alone.
Narrative #2: Genetic anomalies might be life-threatening. Even in ideal circumstances–parents choosing to carry Baby to term, a medical team not pushing abortion, and specialty providers willing to provide life-saving interventions–the chances of pregnancy or infant loss are greatly increased when genetic anomalies are present. While we encourage the use of “life-limiting diagnosis” over the more subjective phrases “fatal fetal anomaly” or “lethal diagnosis,” the reality is...these precious little lives may very well be brief. However, that doesn’t equate to certainty, and of course this is no reason to terminate the pregnancy. Many parents carry to term and are overjoyed to have even a few minutes, hours, days, or weeks with their babies.
Aborting a baby out of fear he or she will not live long is a seemingly obvious irony, and yet with doctors often pushing parents in this direction, sometimes parents are led to believe it is the “compassionate” thing to do. Why, they reason, would anyone want to bring a child into the world who is only going to suffer? Isn’t it better for Mom and Baby to avoid suffering down the road?
PerinatalHospice.org states the following in its FAQs section: “In an era of evidence-based medicine, it's important to note that there is no research to support the popular assumption that terminating a pregnancy with fetal anomalies is easier on the mother psychologically. In fact, research to date suggests the opposite.”
Physically, we know abortion is much harder on women than allowing their bodies to go through the pregnancy and childbirth process as naturally as possible. A mother who continues her pregnancy with a baby who has a genetic condition may have additional factors to consider (such as polyhydramnios or a two-vessel cord, for example). However, it is rare for the mother’s life to be at risk. MFM specialists work to treat both mother and baby with the best possible outcomes.
A mother who is concerned her baby will suffer if born alive can benefit from our calm assurance that she can love and comfort her baby peacefully during pregnancy and after delivery. If Baby is born alive, the medical team can stabilize him or her and assess immediate needs. Palliative care providers are well equipped to address these specific concerns. If your center does not yet have connections with a palliative care team or perinatal hospice providers, it is worth reaching out to interview those in your local area. Not all have the same philosophy, so it would benefit you and the community you serve to connect with those whose values and goals align with yours.
Other helpful points of connections include newborn photographers experienced with uncertain birthing situations and any organizations that specifically minister to families who experience stillbirth and infant loss. Or perhaps your own center already has these kinds of services and resources in place. Either way, it is helpful to gently walk parents through the range of possibilities they may face when Baby arrives. This provides parents with the opportunity to honor their baby’s life, making choices about what would be most meaningful to the family.
This helps us change the narrative: Genetic anomalies might be life-threatening…BUT we can honor a baby’s life, however long or short.
Narrative #3: Genetic anomalies can cause disabilities. For all of the ADA accommodations and public discourse about inclusion, our society still views disability through primarily negative lenses. When a mother faces the possibility that her unborn baby with a life-limiting diagnosis will actually overcome statistics and survive, she may feel another wave of fear. How, she may think, can I possibly care for a child with special needs? Once again we need to surround Mom with a village of support. There are many resources: local, state, and national. Build your own list to share, and network with others to add to it.
Viewing people with disabilities as precious treasures created in the image of God might be a perspective better “caught” than “taught.” As a personal example, I have known and loved many other people with various disabilities, but the prospect of mothering a child with profound needs caused me much grief and anguish during my pregnancy with Verity. Today, though, I know better! WE are the ones enriched by Verity’s precious life! She brings indescribable joy and blessing to our family. As a veteran of this particular narrative, I propose the following way to change it: Genetic anomalies can cause disabilities…AND there can be beauty, joy, and growth despite the difficulties.
Walking with a mama whose baby has a life-limiting condition means giving her time and space to process the many emotions she will experience while also gently guiding her toward love and truth. No matter what happens with her baby, the journey is hard and life-changing. Be prayerful and purposeful as you work with these precious families. One by one, we can help change the narrative surrounding genetic anomalies from heartache to hope.
Opening paragraphs are from the book From Diagnosis to Delivery: What to Expect When the Unexpected Happens During Pregnancy, written by Beverly Jacobson and used as a resource in our ministry. Beverly is a homeschooling mother of 9 and the founder and CEO of Verity’s Village, a nonprofit ministry serving families who receive a life-limiting diagnosis for their babies. She has authored several books for this community, including Our Baby Will Be Different, From Diagnosis to Delivery, and UN-Planning Our Parenthood: Living Our Pro-Life Convictions with Freedom and Joy. She loves writing, speaking, and teaching Christian women how to be rooted in Jesus. Reach out to her at Beverly@BeverlyJacobson.com.