We would like to acknowledge the discussion about the name of the October awareness campaigns. This website runs under the title “Pregnancy and Infant Loss Awareness Day”. Below we outline our reasons for keeping this name in light of the discussion about the importance of language, in particular regarding pregnancy loss or alternative approaches which use names such as “Infant and Child Death Awareness”.
Importance of language
We fully support the fact that language is important and we do not disregard the concerns that parents have raised around language. Especially because language is so important we need to consider that language gets interpreted by individuals within context. The context for a bereaved parent is very different from the context of the general public. As bereaved parents we fully agree with other parents who feel that an expression such as “loss of a baby” or “losing the pregnancy” sounds trivializing compared to what it is – the death of a child. But we don’t need to educate bereaved parents about the fact that children die – they are the ones that have first-hand experience. Instead, we need to educate the general public who are often oblivious to the fact that babies die. As a society we manage to talk about the difficult first trimester of pregnancy and due to a long-running and very successful campaign about Sudden Infant Death Syndrome (SIDS) we are aware of the important time after birth and what to do to lower the risk of SIDS. However, there are several gaps in this timeline:
- Many things can go wrong in the second and third trimester of a pregnancy
- Although SIDS continues to be a major concern for parents and needs to be further researched and addressed, unfortunately many children die for other reasons after birth.
We consider each baby as a unique and important individual – even before birth. Nevertheless, concepts like age disregard life before birth because our age starts counting with the act of delivery into this world. Terms such as “infant” are often associated with a baby after birth, but not with the baby in the womb of the mother. For that reason “Infant and Child Death” might not capture the essence of what we are campaigning for. We try to raise awareness about deaths of children before and after birth.
How do we understand Loss?
We regard the term “loss” as an acknowledgement of the death of a person. It is an established term frequently used in this context, e.g. people expressing condolences at funerals (“I am sorry for your loss”). Although we agree that this might be a misnamed description of death, we do see it as a general issue that requires attention on a broader scale and not specifically related to the death of children, but language in the context of death in general.
How do we understand Pregnancy Loss?
Our interpretation of Pregnancy Loss refers to the death of a child during pregnancy, i.e. before birth. We consider it very important to use the term pregnancy as it immediately raises the connotation to a time before the actual birth. As it does not seem possible to combine death with pregnancy in a short and descriptive way for the awareness campaign and in light of the historical naming that gained some traction, we decided to continue using Pregnancy Loss as a combination.