One challenge people may experience with perinatal loss is understanding the terms used in the healthcare system. Heath care professionals may use medical terminology or jargon that is not commonly used in everyday language. It is okay to ask your healthcare team to explain what they mean as they discuss your child’s condition. Below are a few common terms you may hear throughout your conversation.
Congenital Anomaly: Birth defect.
Life-Limiting: A condition or complication limiting the length of a pregnancy or the length of a baby’s life. Babies diagnosed with a life-limiting congenital anomaly rarely live more than a few hours to days, depending on the condition.
Loss: The experienced absence of a possession or person. The value of the loss is determined by and unique to the individual experiencing the loss.
Grief: The normal emotional response to a loss. This is a personalized feeling and response which an individual experiences to real, perceived, or anticipated loss.
Mourning: The outward, social expression of a loss. Cultural norms, customs, and practices, including rituals and traditions, dictate how one outwardly expresses a loss.
Bereavement: The state of having experienced a loss. This includes grief and mourning, which are the inner feelings and outward reactions of the one experiencing loss.
Bereavement Period: Referring to the time it takes to mourn, grieve, and adjust to a world without the physical, psychological, and social presence of the deceased. This is a highly individualized timeframe.
Perinatal: The timeframe surrounding pregnancy, beginning with conception and ending at the 28th day after the baby is born.
Neonate: A newborn.
Neonatal Period: The neonatal period begins at birth and ends at 28 days of age. The neonatal period coincides with the end of the perinatal period (birth to 28th day of life).
Perinatal Period: The timeframe between conception and birth.
Perinatal Loss: Death or life-limiting diagnosis occurring at any time within the perinatal period, including miscarriage, therapeutic or elective abortion, stillbirth, and neonatal death.
Perinatal Grief: Deep sorrow and sadness following the loss of a pregnancy or infant.
Gestation: The process of fetal development inside the womb. Pregnancy is measured in terms of “gestations.”
Common Life-Limiting Congenital Anomalies
- Anencephaly: A birth defect in which the brain and spinal cord tissue (neural tube) does not form by the 28th day after conception. The cerebral hemispheres, or upper brain, are either missing or very small. Babies with this condition will not survive.
- Trisomy Disorders:
- Trisomy 18 (Edwards Syndrome) this congenital anomaly results from an abnormal number of chromosome 18. There are several types of Trisomy disorders. Babies with Trisomy 18 may not survive to birth, or they may survive to their first birthday.
- Similar to Trisomy 18, Trisomy 13 is a chromosomal disorder. Babies with Trisomy 13 rarely survive to their first birthday.