Pregnancy and Infancy Loss Awareness: The Impact of Genetic Counseling
Since 1988, the month of October has been designated Pregnancy and Infant Loss Awareness month, but for those experiencing it, the grief goes far beyond October. With up to 1 in 4 confirmed pregnancies ending in miscarriage(5), this month holds personal meaning for many women and families. Many people are impacted by miscarriage, stillbirth, SIDS, and infant loss. Communicating about this common experience is critical for healing without any feelings of stigma or shame.
Too often couples, and especially women, feel this is a topic that they can't share, leading to a profound sense of isolating grief. Losing a child is difficult for family and friends and it is important to remember that everyone grieves differently. Consistently checking in and showing support creates an open floor to talk about the loss. Many women worry that miscarriage or losing an infant is their fault and report feeling a sense of guilt. For those currently grieving, it is especially important to make sure they feel supported and can talk about their grief openly.
It is estimated that half of miscarriages are associated with an unpredictable chromosomal abnormality. Many people do not realize that becoming pregnant is not as simple as a sperm fertilizing an egg, but that approximately 70% of fertilized human eggs fail to develop. Of the embryos that progress, 50% of those fertilizations end in a silent miscarriage before cardiac embryonic development or before a woman recognizes a missed period (1). With all of these natural hurdles in place, spreading awareness and normalizing discussion of pregnancy loss can help make women and families feel less isolated during this challenging time.
Although miscarriage is very common, the chance of having two consecutive miscarriages is 2%. The chance of having three consecutive miscarriages is 1%. When this occurs, these individuals may fall under the umbrella of recurrent pregnancy loss (RPL). RPL is defined as having three consecutive pregnancy losses before 20 weeks of pregnancy (1). People experiencing RPL may be seeking answers about why they are experiencing these losses.
Beyond pregnancy loss, infancy loss has a major impact on families as well. In the United States, infancy loss occurs before the first birthday in roughly 6 per 1000 children. The leading causes of infancy loss in the United States include birth defects, premature birth, complications during pregnancy, Sudden Infant Death Syndrome (SIDS), and injuries (2).
These devastating losses can leave families feeling directionless. Often, parents remain silent with their concerns or fears about future complications. Depending on the circumstances, some complications that result in RPL or the loss of an infant are genetic in nature. Families are often unaware of these factors and feel helpless coping with their grief. One of the roles of a genetic counselor is to provide a supportive and compassionate environment to discuss concerns over the cause of RPL or potential genetic factors involved in the loss of an infant. Genetic counselors can help find answers to these questions and provide resources and options. If genetic testing is indicated, a genetic counselor can help facilitate testing through a physician. Supporting families experiencing this unprecedented loss and encouraging those with questions to seek help from a licensed professional can be critical in facilitating healing.
Clover Genetics is a private telehealth genetic counseling service that offers consultations for a variety of genetic concerns. If you or a loved one has experienced RPL, infancy loss, or simply have questions about genetic health risks, contact Clover Genetics today to schedule a consult.
Citations:
Hyde, Kassie J, and Danny J Schust. “Genetic considerations in recurrent pregnancy loss.” Cold Spring Harbor perspectives in medicine vol. 5,3 a023119. 6 Feb. 2015, doi:10.1101/cshperspect.a023119
“Infant Mortality.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 10 Sept. 2020, www.cdc.gov/reproductivehealth/maternalinfanthealth/infantmortality.htm.
Kaiser, Jennifer MD, MA; Branch, D. Ware MD Recurrent Pregnancy Loss: Generally Accepted Causes and Their Management, Clinical Obstetrics and Gynecology: September 2016 - Volume 59 - Issue 3 - p 464-473 doi: 10.1097/GRF.0000000000000214
“October is Pregnancy and Infant Loss Awareness Month.” Star Legacy Foundation, 22 Sept. 2020, starlegacyfoundation.org/awareness-month/.
Ventura SJ, Curtin SC, Abma JC, Henshaw SK. Estimated pregnancy rates and rates of pregnancy outcomes for the United States, 1990-2008. National vital statistics reports; vol 60 no 7. Hyattsville, MD: National Center for Health Statistics. 2012.