You Are Not Alone
Have you received a frightening prenatal diagnosis during pregnancy? You are not alone. A poor prenatal prognosis indicates there could be serious problems with a baby due to complications or abnormalities detected during prenatal testing. This means there’s a higher risk of adverse outcomes such as miscarriage, stillbirth, or severe health problems in the newborn. Each year in the United States, approximately 120,000 pregnancies are affected by fetal anomalies, according to the Centers for Disease Control and Prevention.1 While the label “birth defect” is a medical term, it certainly does not mean that these individuals are defective. Regardless of your personal beliefs about when life begins, I think we can agree that all life has beauty and value.
Understanding Prenatal Diagnoses
Birth defects can range from mild to severe, and life expectancy depends on which body part or parts are involved and to what degree. They happen due to a complex mix of factors, including our genes, behavioral choices (such as nutrition, drinking alcohol, or taking recreational or prescription drugs), maternal age, the environment both inside and outside of the womb, and chance.
Screening and Diagnostic Tests
Non-invasive prenatal tests (NIPT) screen for many conditions using fetal DNA found in maternal plasma and can detect common issues like Trisomy 21 (Down Syndrome). However, NIPT for rarer conditions can produce a high number of false positives. Prenatal testing can indicate an increased risk but does not guarantee that the condition is present. Invasive diagnostic procedures such as amniocentesis remain vital for confirming NIPT results and diagnosing genetic disorders. NIPT can also yield false negatives, meaning the test shows a low risk when the fetus has a condition.2 Sensitive and informed genetic counseling, resources, and support are crucial to help parents understand the results of prenatal screening and testing.
Treatment Options Before Birth
Some birth defects, like spina bifida, certain heart defects, diaphragmatic hernias, lower urinary tract obstructions, and other conditions, may be eligible for prenatal treatment inside the womb, which can lead to significant improvement.3 Receiving a difficult diagnosis before birth requires that parents have some time to process the diagnosis and seek experienced clinicians and loving support to help them prepare for an affected infant after delivery.
In the U.S., a significant proportion of women choose to terminate pregnancies when presented with an adverse prenatal diagnosis. Estimates suggest that the vast majority, ranging from 67% to 90%, of pregnancies diagnosed with Down syndrome end in abortion. Similarly, a large percentage of pregnancies diagnosed with other “life-limiting” conditions, like Trisomy 13 and 18, are also terminated.4
In the US, the legality of abortion following a poor prenatal diagnosis varies by state. Many bans do not explicitly address fetal anomalies, leaving it to medical professionals to interpret whether the condition constitutes a life-threatening situation for the pregnant person.
Survival Rates and Hope
According to the Glasgow Register of Congenital Anomalies, children were followed to assess survival rates from birth up to the age of 5 years. The proportions of all live-born infants with congenital anomalies surviving to the end of the first week, and first and fifth years were 94%, 89%, and 88%, respectively. While the survival rate beyond age 5 shows a decrease, this does leave a significant proportion of babies with fetal anomalies surviving to adulthood.5 Overall, this study illustrates the fact that almost 90% of live-born infants with congenital anomalies survive to five years. While most babies with birth defects survive their first day (around 98.9%), the probability of survival has been documented as high as 93.9% at 10 years in some situations.5
The Role of Perinatal Hospice
While up to 81-90% of women choose to terminate a pregnancy after receiving a lethal or life-limiting diagnosis, approximately 40% of women in a British study chose to continue the pregnancy when offered perinatal hospice and palliative care. Women are more likely to carry a pregnancy to term when they feel they have strong support from their partner and other family members. Perinatal hospice is a specialized form of care focused on supporting families when a prenatal diagnosis indicates a life-limiting condition for their unborn child. It compassionately guides families through pregnancy, birth, and the time following birth until the baby’s death. It centers on enhancing the quality of life for both the baby and the family, focusing on comfort, emotional support, and meaningful experiences during the limited time the family has together.
Faith, Grief, and Healing
An NBC news story featured families who found meaning and dignity in the lives of their children who lived for only a short time. During the short life of their son Gabriel, his sisters and extended family met him and held him, and the baby’s father baptized Gabriel himself when it was clear the priest wouldn’t arrive before he died. He was beautiful, Kuebelbeck remembers. “Born perfect, except for his heart,” read the announcement she sent out about Gabriel’s birth and death. Some have wondered why she’d put herself through a pregnancy and birth when she knew she’d go home with empty arms. “It isn’t all for nothing,” she says. “You can still love that baby, protect that baby, and give that baby a peaceful goodbye. That’s not nothing.” “I wanted people to experience him,” she says. “And I think he was experiencing being held.”6
Final Thoughts
Diagnosis of a life-limiting fetal condition should not be an automatic death sentence. While abortion cannot heal or reverse a diagnosis, some families find that continuing the pregnancy provides a sense of peace and purpose during an otherwise painful time. Babies diagnosed with a medical condition often face discrimination, both inside and outside of the womb. The journey for each baby with a life-limiting condition is unique, and these babies deserve special attention and individualized medical care, just like any other child. Every baby and every life has a God-ordained purpose, whether it be to impact the world through a life of 80 years, or a life of only 16 days or 16 hours. The impact of giving every baby a chance to experience life and love, to feel the arms of their parents, siblings, family, and friends, to hear, smell, taste, and see what they can is a beautiful act. Love can be felt. A baby that only lives a short time impacts a wider circle of people than most people realize— from the doctors and medical staff to friends and neighbors who might meet the baby, and to people who only hear the story. Every life has an impact, like a ripple in a pond, often with more far-reaching effects than we’ll ever know. A baby’s life, though short, brings us lessons on the sanctity and fragility of life, illustrates the powerful and unconditional nature of parental love, and may even bring someone to saving faith in Jesus Christ.
The grief of surrendering a baby to abortion vs. the grief of losing a baby to a fatal diagnosis shares similarities and differences. Many women who have chosen abortion say they would give anything for a chance to hold their baby, even for a moment. They would rather have met their baby, even if it was traumatic, than to deprive their mind and heart of the chance to have a lasting image of the infant they could hold on to for the rest of their life. Many mothers and families are relieved that they let God make the choice about the length of their child’s life rather than being the ones to make the impossible choice. With abortion, guilt and shame can be powerful and debilitating. With a natural death, no matter how heartbreaking, grief has a path that is well understood and can be navigated with faith and support.
Support
If you are faced with the heart-wrenching decision as to whether or not to continue your pregnancy in the face of a daunting prenatal diagnosis, give yourself the time you need to process the news, research what life may look like for those who are living with the condition, and gather your support system and resources. As with any major life event, basing a decision to abort or to continue with a pregnancy should not be made in haste or under pressure. Take the time to gather the facts, recruit your support team, and reflect on the lifelong impact that abortion will have not only on your baby, but on your heart.
The team at An Even Place is here to listen with love and refer you to organizations that can help. Connect with our services here.
1 https://www.cdc.gov/birth-defects/about/index.html
2 https://pmc.ncbi.nlm.nih.gov/articles/PMC10417786/
3 https://www.mayoclinic.org/tests-procedures/fetal-surgery/about/pac-20384571
4 https://pubmed.ncbi.nlm.nih.gov/10521836/
5 https://pubmed.ncbi.nlm.nih.gov/2501581/
6 https://www.nbcnews.com/id/wbna236822637 https://lozierinstitute.org/five-facts-about-life-limiting-fetal-conditions/
