WHEN NAVIGATING A PRENATAL DIAGNOSIS, WHETHER YOU ARE THE PARENT, THE PROVIDER, OR THE NETWORK OF SUPPORT, CLARITY IS CRITICAL FOR FEELING FULLY INFORMED, EQUIPPED, AND SUPPORTED.
Carrying To Term believes that clear, compassionate, and easy to understand language has the power to shape how parents process a diagnosis, make fully informed choices, and cope following diagnosis, throughout pregnancy, and in life after loss. When parents understand what is happening, they are better able to connect with their providers, navigate their experience, and communicate with and get support from their network of family and friends.
Prenatal diagnoses that lead to the death of a baby have been presented using a variety of terms and phrases, including terminal, incompatible with life, lethal, fatal, and even the word poor, however, the current medical practice is to use the term life-limiting. Carrying To Term, in alignment with medical practice and standards, uses the term life-limiting across our website, resources, and support. To help you fully understand the term life-limiting in the context of prenatal diagnoses, we are providing a deeper understanding into what life-limiting means and why it is the standard terminology.
“Carrying To Term, in alignment with medical practice and standards, uses the term life-limiting across our website, resources, and support. To help you fully understand the term life-limiting in the context of prenatal diagnoses, we are providing a deeper understanding into what life-limiting means and why it is the standard terminology.”
WHAT LIFE-LIMITING MEANS
Life-limiting is an adjective used to describe a medical condition that is without a cure and is expected to cause a person to die earlier than expected.
When used in the context of prenatal diagnoses, life-limiting refers to a condition that is without a cure and in which death is expected for the baby within the perinatal period. The perinatal period is generally defined as the time before and shortly after birth. Though the exact parameters vary, the common consensus is that the perinatal period refers to the time between the 20th week of pregnancy and 4 weeks after birth.
When we use the term life-limiting, we are referring to a condition that leads to the death of the baby, typically, though not always, in the perinatal period. It is important to distinguish prenatal diagnoses that limit the duration of the baby’s life from conditions that might impact the quality of the baby’s life but not necessarily the duration of the baby’s life.
Prenatal diagnoses like spina bifida and Down syndrome can be considered life-limiting, even when the duration of life is not necessarily limited, as the quality of life varies based on severity, co-diagnoses, and even the effects of early interventions. Prenatal diagnoses like cystic fibrosis can be considered life-limiting, as it can affect both the quality of life and the duration of life due to complications and risks secondary to the diagnosis itself.
We believe that clearly distinguishing between quality of life limiting and duration of life limiting diagnoses is both compassionate and critical. It is compassionate because giving or be given hope based on false understanding is devastating. It is critical because understanding that a prenatal diagnosis of a life-limiting condition is fatal for the baby means that parents can process information, ask questions, and make fully informed choices all while embracing the time they will have with their child, no matter how brief.
“When we use the term life-limiting, we are referring to a condition that leads to the death of the baby, typically, though not always, in the perinatal period. It is important to distinguish prenatal diagnoses that limit the duration of the baby’s life from conditions that might impact the quality of the baby’s life but not necessarily the duration of the baby’s life.”
WHY LIFE-LIMITING IS USED
Life-limiting is considered to be the most compassionate, yet still clear, term for diagnoses that lead to the death of a baby. The words terminal, lethal, and fatal are technically and medically accurate in the vast majority of cases, but for some families, the words lack a sense of empathy and compassion that helps them hear and process information. When parents do not feel supported or as though their provider empathizes with their situation, it can be difficult for parents to trust their providers, listen to the information being presented to them, cope with the diagnosis, and make informed choices. Life-limiting has been embraced as the more compassionate and less emotionally traumatic way to explain a prenatal diagnosis that leads to the death of a baby.
Incompatible with life is another phrase that has been used to describe a life-limiting prenatal diagnosis, but it is not a medical diagnosis. Rather, it is a statement of opinion or judgement, implying that the diagnosis and life cannot coexist in any meaningful way. Pregnancy continuation is about embracing the time- the life- parents will have with their child, no matter how brief. Parents can make a life full of memories with their unborn baby. Parents can celebrate the moments they will have with their baby after birth, even if their child is born still or only lives for a brief period of time. Depending on the diagnosis, parents may get hours, days, weeks, months, or even years with their child. Therefore, incompatible with life is an unclear and often inaccurate phrase that can heighten anxiety, compound grief, and unduly influence the choices made by parents following a diagnosis.
Life-limiting is the most inclusive phrase, encompassing diagnoses that may lead to a still birth, diagnoses in which the baby may live beyond the perinatal period, and every diagnosis in-between. Life-limiting acknowledges the devastating realities of the diagnosis while honoring the parents’ opportunity to embrace and celebrate the moments they will have with their child.