The unexpected experience - prenatal diagnosis
Finding out your pregnancy has a life limiting diagnosis can be life changing. A recent article dove into the experiences of women and couples after they received a prenatal diagnosis and made the decision to either continue or terminate the pregnancy. This blog post will highlight some of the findings from the article with the intention to spread its message. While it is not frequent a pregnancy is diagnosed with a life limiting condition, it is not a rarity. Even if someone does not personally experience this situation, as a society, we need to increase awareness and overall social support.
Few conditions are considered life limiting. Life limiting means a baby is expected to pass away soon after birth or while in pregnancy. However, there may be few instances that life extends after the newborn period. In the article, the diagnoses included Trisomy 13, Trisomy 18, and a baby with multiple birth differences but not an identified genetic diagnosis.
Trisomy 13 and Trisomy 18 are genetic conditions caused by having an extra chromosome. Having an extra chromosome means there are more genes that typically expected which can cause multiple birth defects such as heart defects. The Support Organization for Trisomy (SOFT) has wonderful resources to learn more about Trisomy 13 and Trisomy 18.
In the study, there was one couple and two women, who terminated the pregnancy and three couples, who continued the pregnancy. Of those that continued the pregnancy, none of the babies were born alive. The point of the study was to explore the care experiences of these families. With this insight, there can be improvements in care management and support.
There were three themes identified:
“Attachment and Coping”
“There’s no place for you in the pregnancy world”
“Consistency of Quality Care”
Theme One: “Attachment and Coping”
In learning about the diagnosis, many of the families felt shocked at the news. People may learn about a birth defect at an anatomy scan. The anatomy scan is the ultrasound that occurs in the second trimester. It used to be the time that a family would learn if the baby is a boy or girl. However, while most of the time, babies are found to be developing normally, there can be birth defects identified at this time.
Other times people learned about the unexpected news after a positive blood test and subsequent diagnostic procedure like the needle in the belly test or amniocentesis.
Not only is the shock difficult to deal with, but informing friends and families of the news can be a debate. Some people shared one post on social media to get the message out whereas other did not. Some joined support organizations in order to find people with similar experiences. Some hospitals and local groups may exist for families but there are also websites available: carrying to term and ending a wanted pregnancy.
For some, considering the personhood of the baby was beneficial to their grieving process whereas for others it created distress, particularly for those who terminated the pregnancy. Remembrance activities such as pictures, mementos, or a service and naming the baby were ways to continue the baby-parent relationship and engagement.
Theme Two: “There’s no place for you in the pregnancy world”
Now, this is not anything that someone was explicitly told once learning about the diagnosis. This statement is in reference to the feelings that the families had. There was no longer the shared experience with other pregnant people as they were expecting to bring a baby home which was not the case for the families in the article. Their futures were no longer aligned.
Theme Three: Consistency of Quality Care
The families highlighted the impact clear, empathetic, and thoughtful communication had on their experience. It was important the families received information on the diagnosis early on to best plan and to avoid feeling isolated. Some families felt they were on their own to figure out what it all means and what to do. Knowing they had someone to call and being supported after the birth of their pregnancy or termination were important for quality care.
This article is helpful to healthcare providers as it provides a lens to the experience of patients that we take care of. However, the topics discussed are important for everyone to know about.
When meeting a pregnant person on the street, knowing there is a small possibility they may be experiencing what these families did, may change the questions asked or limit the curiosity questions people naturally have. If someone is pregnant, knowing most likely their pregnancy will be healthy, but there is a 3-5% chance that a birth defect is identified, may help understanding of the news.
While nothing can take away the grieving and distress a prenatal diagnosis causes, awareness and support efforts can attempt to relieve some of the isolation families may feel.
Resources:
* This blog constitutes general information about genetic testing and medical screening. This blog does not offer or provide medical advice or diagnosis, and nothing in this blog should be construed as medical advice or diagnosis. Do not rely on the information in this blog/article to make medical management decisions. Please consult with a medical professional before making those decisions. Do not delay in seeking professional medical advice if you think you have a medical concern. Do not disregard professional medical advice based on any information received in this blog.
