If you are thinking about or have been recommended to get additional prenatal testing done, here is some general information and guidance on how to make your decision.
(For an overview of the different invasive and non-invasive prenatal diagnostics tests, see our overview article.)
This article was written in collaboration with midwife Amelie Suermann.
Amelie is a Berlin-based midwife with a Master of Science degree in Global Health. She works as one of the English-speaking midwives at Praxis Hebammenzeit in Friedrichshain. And she just become a mom for the second time!
Some general information and how to make your decision
There are many advantages of prenatal diagnostics:
They make it easier to assess the risk of a special condition, illness or disability.
Parents can prepare themselves for a special condition, illness or disability of their child.
Under certain circumstances, the birth can be prepared accordingly, and decisions about the woman's own life, as well as the child's life after birth, can be made and planned.
Should the continuation of the pregnancy endanger the physical and/or mental health of the woman, or if the couple wishes to terminate after receiving all the information on a certain condition, an abortion with medical indication can be considered.
Through prenatal examinations, pregnant women hope for confirmation that they are having a genetically typical child. Inconspicuous findings can be reassuring.
There are, however, also some concerns with prenatal diagnostics:
Sometimes, the examinations can also be accompanied by uncertainty.
Uncertain prognoses and waiting for test results and diagnoses can make expectant mothers reluctant to bond with their child.
The expectations of prenatal diagnostics cannot always be fulfilled: the examinations cannot give you a 100% certainty of having a child with a typical set of chromosomes.
Some results of non-invasive examinations represent a calculated risk for certain conditions rather than a diagnosis.
It is usually not possible to deduct any information about the severity and effects of any potential disability, condition or disease.
In invasive examinations, there is a risk that labor may be induced, resulting in miscarriage.
Therapy of the child in the womb is only possible in rare cases; Oftentimes the tests give indications of a disease, condition or disability for which there is no therapy.
Keep in mind that the outcome of a diagnosis of a trisomy will have to result in the parents’ decision to either terminate or continue their pregnancy.
If a couple has already decided that they would not want to terminate a pregnancy in the presence of a certain diagnosis, then they can consciously choose to opt out of the tests.
So, how to decide?
It may be helpful for you to know that 96% of all children are born without a disability and only 4.5% of all disabilities are congenital, meaning present from birth.
At the same time, prenatal diagnostics can be reassuring, especially for women and couples who have lost a child or whose family has a genetic disease.
But it can also increase the fears and uncertainties that are part of any pregnancy.
So, every expecting person or couple needs to weigh up the pros and cons of prenatal diagnostics and decide for themselves if this is something they would like to do and what options they might consider in the presence of a diagnosis.
Where to receive further information and counseling
In the presence of a diagnosis of a trisomy, it can be very helpful to be fully informed about the different factors that might influence your decision to continue or terminate a pregnancy. These include the odds of associated medical conditions, as well as the expected quality of life and possible therapy and interventions for the child and their family.
Many parents benefit from neutral counseling with a specialist in human genetics, as well as counseling through organizations, such as the Down Syndrome Info Center for trisomy 21, and connecting with other parents that have a child with said condition.
You may also talk to your doctor or midwife to see what they would recommend and how they can help you understand your options and make an informed decision. There are also many organizations that can help you with your decision making process, such as Pro Familia.
All the best!
Sources:
BZgA-Broschüre "Pränataldiagnostik - Informationen über Beratung und Hilfen bei Fragen zu vorgeburtlichen Untersuchungen"
https://www.pnd-beratung.de/was-ist-praenataldiagnostik/
