NIPT and Future Decisions: The Dilemma of 'Choosing Life' for Parents and the Struggles of Doctors

What is "Choosing Life" After NIPT?

The number of NIPT tests is increasing year by year, and at the same time, more people are struggling with what to do about their fetus's future.
In fact, the number of NIPT tests was 7,775 in 2013, but by 2018 it had nearly doubled to 14,344. According to the statistics up to March 2019, the pregnancy termination rate for those who tested positive with NIPT was 78%, indicating that many chose not to continue their pregnancy.

Knowing chromosomal abnormalities early through NIPT raises the question, "What is truly the best option?"
Most of those who tested positive chose to terminate the pregnancy, but it is not an easy decision, and it is undoubtedly a painful and sad choice.
There is the thought that one life is lost by this decision, and even if the child is born, a very challenging path awaits. This raises questions about whether the parents and child can truly be happy with either choice.
Based on the experiences of a couple who made two significant decisions during two pregnancies, let's think about "choosing life" after receiving a positive NIPT result.

A Couple's Two Decisions and Farewells

A couple discovered fetal abnormalities through amniotic fluid tests and were told their baby had a possible "trisomy 18." Later, the fetal heartbeat suddenly stopped, resulting in a stillbirth.
In the subsequent pregnancy, they also discovered complex chromosomal abnormalities through amniocentesis and chose the painful path of termination.
The couple, who had longed for a child, finally became pregnant at the age of 37, considered a high-risk age. During pregnancy, they discovered through testing due to polyhydramnios that the fetus had trisomy 18.
Despite this, because the fetus did not show severe symptoms like heart defects, and the birth date was approaching, they waited for the birth.
However, this was not to be. The fetal heartbeat stopped suddenly, resulting in stillbirth.
Trisomy 18 often leads to short lives whether the baby is born or not, presenting a painful reality either way.

Parents Tormented by Time with Their Child and Inner Struggles

After the stillbirth, the couple was pregnant again. However, the test results were harsh.
The fetus had complex chromosomal abnormalities, which not only made it unlikely to grow significantly but also uncertain whether it could be born.
The couple was unsure whether to continue the pregnancy, but as parents, they had one wish:
"To spend as much time as possible with their child."
However, imagining the child not being with them later made them feel it might be better to decide before the sadness grew too much.
Thus, the couple chose termination.
Perhaps only a couple who had experienced such great sorrow could come to this decision.
Considering the lack of guarantees for a safe birth or long life even if born, they made the decision before their hearts could be further shattered by accumulating sorrow.
If we put ourselves in their place, could we make the same decision?
How many people can choose to part with a child who is alive and moving inside them?
For parents who have already lost one child, being forced to choose to part with another brings unimaginable deep sadness.
Parents who must decide their child's future, faced with "choosing life."
How did they spend their short time with their child?

The Struggles of Doctors in the Position of Saving Lives

About chromosomal abnormalities and other disabilities.
Even if a chromosomal abnormality like trisomy 18 is found, if it were known that everyone could live a happy life, it might be easier to accept disabilities.
However, the reality is that some people find it difficult to see their child with disabilities as cute.
It is not a simple matter of a child automatically being loved, and accepting the reality of disabilities is something that cannot be fully understood until the child is born.
When a disability is found, neither doctors nor those around can say "You should terminate" or "You should not terminate because it is a precious life."
Doctors explain the tests the pregnant woman wants, conduct the tests, inform about the found disabilities or diseases, and help the couple understand, but the decision on what to do next is up to the couple.
Therefore, doctors who encounter small but strong lives daily also struggle deeply.
"Was this really the right thing?"
"Was there no way to save this life?"
Such dilemmas are faced by those whose job is to save lives.

NIPT Testing is Not "Choosing Life"

The number of pregnant women undergoing NIPT is increasing.
As the number of NIPT tests increases, so does the number of fetuses testing positive, leading some to decide not to continue the pregnancy.
However, NIPT testing is not about choosing life.
NIPT is about understanding the fetus's condition, providing appropriate support from parents, families, and medical institutions, and ensuring comprehensive backup for the baby to be born, as well as helping parents understand the disabilities and the future.
NIPT can detect multiple chromosomal abnormalities, but it is essential to first know about these disabilities and prepare parents to accept this reality.
Many people live long and fulfilling lives with disabilities, and it is necessary to find answers through detailed counseling on how to proceed from here.
The decision should not be left to doctors.
The feelings of wanting the child to live even with disabilities, or concerns about giving birth due to the disabilities, are natural feelings born out of sadness and suffering.
It is not right for others to ridicule these feelings as "choosing life."
Parents who must decide the future of a child they longed to meet.
Behind the increasing number of NIPT tests, there are people facing unexpected confusion along with the progress of medical technology.

References

• Showa University School of Medicine, Department of Obstetrics and Gynecology - Non-Invasive Prenatal Genetic Testing
• yomiDr. - A child with trisomy 18 is stillborn. In the subsequent pregnancy, the mother was told that chromosomal abnormalities were found again...