Medical Terminology
Depending on how things have been explained to you, you may have encountered terms you may feel unfamiliar with and may not have been explained to you in a way you could easily understand. The following is a brief definition of many common terms used surrounding prenatal diagnosis.
Adverse Diagnosis (Prenatally)/Prenatal Diagnosis: An unexpected or unusual condition found, tested for, or suspected during an unborn child’s development. A positive screening test indicates an increased possibility of a condition. A diagnostic test confirms the presence of a condition, although no test is 100% accurate. If you receive a test result, it is important to clarify if the test was a screening or diagnostic test.
Disability/Persons with Disabilities: The CDC defines a disability as “any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).”1 Disability covers a wide range of physical and mental conditions and limitations.
“Fatal” or “Lethal” Condition: This term usually refers to a life-limiting condition. These are considered to be conditions “for which there is no reasonable hope of cure and from which children will ultimately die”2. A confirmed diagnosis of the presence of a life-limiting condition does not predict how long a person may live. There is a wide range of possible outcomes, with some babies passing naturally in the womb and others living for years. Medical treatment may extend the life of children. Doctors specializing in the treatment of children with a specific condition are best suited to understand and explain options for a particular child.
Fetal Abnormality/Anomaly: This is another way to state adverse diagnosis for the unborn.
Fetal vs. Newborn Surgeries: A fetal surgery occurs when the baby is still in utero. A growing number of conditions may be treated surgically in utero. A newborn surgery occurs shortly after an infant is born. Doctors specializing in the treatment of children with a specific condition are best suited to understand options for a particular child.
“Incompatible with Life”: This term usually refers to a life-limiting condition.3 These are considered to be conditions “for which there is no reasonable hope of cure and from which children will ultimately die”2. A confirmed diagnosis of the presence of a life-limiting condition does not predict how long a person may live. There is a wide range of possible outcomes, with some babies passing naturally in the womb and others living for years. Medical treatment may extend the life of children. Doctors specializing in the treatment of children with a specific condition are best suited to understand and explain options for a particular child.
Life-Limiting Conditions: These are considered to be conditions “for which there is no reasonable hope of cure and from which children will ultimately die”2. A confirmed diagnosis of the presence of a life-limiting condition does not predict how long a person may live. There is a wide range of possible outcomes, with some babies passing naturally in the womb and others living for years. Doctors specializing in the treatment of children with a specific condition are best suited to understand and explain options for a particular child.
Misdiagnosis/Overdiagnosis: An incorrect diagnosis of an illness or condition. A positive screening test may sometimes be conveyed or understood as a diagnosis, when it actually indicates an increased possibility of a condition. A diagnostic test confirms the presence of a condition, although no test is 100% accurate.
Non-Viable Baby/Pregnancy: There is no universal definition of viable or non-viable. There are a variety of criteria used at different stages of gestational development to diagnose viability. One example of how a pregnancy is described as a non-viable pregnancy is the absence of a fetal heartbeat when one should be present. Viability is often used in two senses — one in reference to the baby’s anomaly, and the other to a baby’s gestational age. Viability is rooted in the “stage of pregnancy where, on average, an unborn child can survive on his or her own outside the womb, albeit with medical support. Besides being specific to an individual baby’s overall physical condition, ‘viability’ itself is a term whose application varies over time, occurring earlier in pregnancy as active treatment resources increase and medical technology and skills improve.”4
Regarding the baby’s anomaly, the term might be applied in a way to describe any prenatal diagnosis that isn’t a “normal” pregnancy. “Non-viability” be used to justify early-induction abortions or limit care following birth.
Comfort Care/Palliative Care/Perinatal Bereavement Care: These terms connote care offered to children and their families during and following a live birth when the child is expected to die shortly. Care may include holding the baby, keepsake collection such as taking footprints, baptism, the use of a cuddle cot, dignified burial planning, and extended family hospital visits. This is offered in lieu of extraordinary medical intervention when it is not possible or not desired. Some providers may use comfort care/neonatal comfort care or palliative care/perinatal palliative care to refer to care for the baby prior to its death, and perinatal bereavement care to refer to the family services following death, while others use the terms interchangeably. These services vary and the use of the same terms may be confusing for parents, so it is important to ask for clarification over exactly what is being offered.
Perinatal Hospice: Perinatal hospice is the term for the pregnancy and birth care after a life-limiting prenatal diagnosis is received. It treats the womb as a hospice and allows baby to pass away naturally without hastening or inducing its death. Perinatal hospice prenatal care may include extra ultrasounds and treating mother and baby’s health as any other pregnancy. Comfort care/palliative care/perinatal bereavement care described above can be utilized within a perinatal hospice program at birth, however perinatal hospice care begins before birth at the time of diagnosis. Read more about perinatal hospice here from NCBC and also visit https://www.perinatalhospice.org/faqs.
Quality of Life: This is a term that may be used to describe the perceived life a person may experience. The quality of one’s life is best expressed by each individual. Extensive studies of people living with disabilities reflect a positive view on life.5
Stabilization and Evaluation: This refers to a standard practice in neonatal medicine wherein at birth an infant is provided with sufficient general respiratory support to stabilize the baby so an evaluation on the living child can be completed. Infants with prenatal diagnoses benefit from stabilization and evaluation to confirm the diagnosis and condition of the child and determine what course of treatments, if any, is appropriate.
Screening Test vs. Diagnosis vs. Prognosis: A screening test is intended to measure increased risk of an anomaly. A diagnosis is a confirmation of an anomaly. No test is 100% accurate. A prognosis indicates the likely outcome for that anomaly. Current medical technology does not allow for an accurate prenatal prognosis of how long a baby may live. See our Understanding Test Results page for more information.
Something Wrong with Baby: This is a general term that has no specific medical meaning, although it generally refers to the suspicion or confirmation of the presence of a prenatal diagnosis. It is important to first understand specifics regarding testing and options from your medical team.
Sick Baby: This is a general term that has no specific medical meaning, although it is generally used to describe children who have a serious illness or medical condition. It is important to first understand specifics regarding testing and options from your medical team.
Sources:
- https://www.cdc.gov/ncbddd/disabilityandhealth/disability.html
- Lorna K Fraser and Roger Parslow, Children with life-limiting conditions in paediatric intensive care units: a national cohort, data linkage study. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5965357/#:~:text=Life%2Dlimiting%20conditions%20(LLCs)%20are%20those%20for%20which%20there,muscular%20dystrophy%20or%20neurodegenerative%20disease.
- https://lozierinstitute.org/the-term-incompatible-with-life-is-incompatible-with-the-best-care/
- https://lozierinstitute.org/questions-and-answers-on-late-term-abortion/
- Examples of studies include: https://doi.org/10.1002/ajmg.a.34293 https://phmd.pl/resources/html/article/details?id=55178&language=en