What Is A Fatal Fetal Diagnosis?
November 15, 2024
One of the scariest aspects of being a medical mom or dad, especially for a parent who receives a prenatal diagnosis, is the unknown terms that are used to describe our babies’ conditions. One of those often used terms our parents hear is “fatal fetal diagnosis.” Pregnancy Care Centers refer to this as an “adverse fetal diagnosis,” and at Verity’s village, we often refer to this as a “life-limiting prenatal diagnosis.”
Why do OBYGNs refer to a baby’s condition as a “fatal fetal diagnosis?”
If a diagnosis will result in a death earlier than what a medical professional considers normal, they label the condition as fatal. However, as many parents with a prenatal diagnosis are discovering, “fatal” does not always mean that their babies will die in utero or even within the first year. Some babies are born alive and thriving with a so-called “fatal fetal diagnosis.” Every diagnosis is unique, and every baby is unique.
At Verity’s Village, we call these conditions “life-limiting prenatal diagnoses.” We acknowledge that we do not know how long a baby will spend with their parents on earth, but every moment is a precious gift. Referring to a condition where a baby may die in utero, but may live days, weeks, months, or years as “fatal” is shortsighted and leads to pressure being applied to parents to abort rather than experiencing the time they have to spend with their baby.
We encourage medical professionals to change the narrative with us, and change the language they use when speaking to mothers and fathers about the prenatal conditions their baby is facing.
List of Diagnoses
These are diagnoses often considered by the medical community as “fatal fetal diagnoses:”
- Trisomy 13
- Trisomy 18
- Triploidy
- Renal agenesis
- Limb body wall complex
- Anencephaly
The question we are left with regarding this medical title of “fatal” is whether this diminishes the value of this life. When this term is used by some medical practitioners, the intent is to devalue this baby and encourage a parent to decide to take matters into their own hands and end this babies life immediately. However, if instead, we remember that fatal really means life-limiting, we are able to realize that fatal is not NOW unless we make it so. Are we going to limit this life? Or does this condition mean we have only a short amount of time to cherish this baby.
What are the options for a baby given a fatal fetal diagnosis?
Many parents do not realize that more options exist for their babies besides scheduling an abortion. Medical professionals need to be transparent and give parents a full understanding of their choices, not just corner parents into one option.
Palliative care is one option available to babies with a prenatal diagnosis. Palliative care does not mean interventions are not available, but instead means that there is support for processing the upcoming medical decisions and providing pain relief as needed. After delivery and depending on the baby’s needs, a baby may be offered hospice care.
Parents have a wide range of other options for their baby in utero and after birth. Some prenatal conditions have options for surgery in utero. Some conditions have options for surgery after birth. Some parents choose to hold their baby for the last moments of their life, and some parents choose medical interventions in the hope of more time for their baby.
When carrying to term, it helps to have someone to walk you through the options! Verity’s Village has a Parent Care Coordinator with a nursing background who experienced her own prenatal diagnosis. She meets with parents via Zoom to help them prepare to meet their baby and know their options. You can connect with her in our Facebook support group listed below.
Sign Up for Support
If you have received a life-limiting prenatal diagnosis, head over to our Facebook Group –> From Diagnosis to Delivery to meet other parents who have received a diagnosis for their baby, to get hooked up with our Parent Care Coordinator, and RECEIVE SUPPORT.