NIPT and future decisions, and the conflicts between parents and doctors who are shaken by the "selection of life".

NIPT and future decisions, and the conflicts between parents and doctors who are shaken by the selection of life

Is the early identification of chromosomal abnormalities by NIPT really "selection for life"?
In this issue, we will consider the "selection of life" after a positive NIPT, based on the experience of a couple who made two critical decisions in two pregnancies.

What is the "selection of life" that awaits after NIPT?

The number of NIPT cases is increasing each year, but at the same time, more and more people are wondering what to do about the future of their fetus.
In fact, the number of NIPT tests almost doubled from 7775 in FY 2013 to 14344 in FY 2018; the total through March 2019 shows that the pregnancy interruption rate for those with a positive NIPT test was 78%, indicating that many chose not to continue the pregnancy.

The early identification of chromosomal abnormalities by NIPT is also a moment when we are confronted with the question, "What is really the better option?
The majority of those who have tested positive have made the decision to terminate their pregnancies, none of which is an easy decision, and it is hard and sad to imagine.
The choice will destroy a life, and even if the child is born, there will be an incredibly difficult road ahead. The question remains, "Which choice will truly bring happiness to both the parent and the child?
In this issue, we will consider the "selection of life" after a positive NIPT, based on the experience of a couple who made two critical decisions in two pregnancies.

A Couple's Two Decisions and Separation

She became pregnant and was tested for excessive amniotic fluid and was told that the baby had an abnormality and may have an "18 trisomy," after which the fetal heartbeat suddenly stopped and the baby was stillborn.
In the next pregnancy, an amniotic fluid test revealed a complex chromosomal abnormality, and the couple chose the painful path of abortion.
The couple wanted to conceive but were unable to have a baby, and when they finally did, they were 37 years old. Due to an amniotic fluid overload that occurred during pregnancy, tests revealed that the fetus had an 18-trisomy.
Nevertheless, we wait for the time of birth, as no serious symptoms were seen, such as cardiac malformation, and the time of delivery was almost upon us.
However, it did not come to pass.
Suddenly the heartbeat stopped and the result was stillbirth.
18 trisomy, which means that even if they are born, they often do not live long, which is a very painful reality whether they are able to be born or not.

Parents tormented by time and conflict with their own children

After the stillbirth, the baby came to the couple again.
However, the results of the tests were brutal.
These babies have an even more complex chromosomal abnormality than 18 trisomy, in that it is not known whether they will be able to grow large or even be born.
There is no way for the couple to know, of course, whether or not they can continue the pregnancy. Still, as parents, we have one thought.
I want to spend as much time with my child as possible."
Despite these feelings, when I imagine that I will not be able to be with them later on if they remain in my belly, I feel that it is better to make the decision while the grief is still a little small.
The couple then opted for an abortion.
I think the couple was able to answer the question because they had experienced great sadness once.
There was no guarantee that the baby would be born safely, and even if it was born, there was no guarantee that it would live long. The couple considered various cases, worried, and decided to make a decision before their hearts were broken by the accumulation of more grief.
If you were to replace this with yourself, would you be able to make the same decision?
How many of us can make the choice to part with our child, who is certainly moving in our belly and is alive right now?
We know that the feelings of those who have experienced the loss of a child and are faced with the choice of having to leave their child again are filled with a grief so deep that it is completely unimaginable.
Parents are forced to make their own choices about the future of their children, and are forced to "choose life".
How did you feel during the short time you spent with your child?

A position of saving lives, a doctor's conflict

Chromosomal abnormalities and other disorders.
Even if a person is found to have a chromosomal abnormality such as 18 trisomy, if everyone knows that he or she will always, 100 percent, lead a happy life, he or she can accept the disability in a positive way.
However, it is also true that some people actually find it difficult to find their own children with disabilities cute.
It is not simply the case that my child is absolutely adorable, and I also have to accept the fact that he or she has a disability, and there are many things that I will not understand until I actually give birth to him or her.
When a child is found to have a disability, people around her, including doctors, cannot say, "You should have an abortion," or "This is a precious life, so let's have the baby without an abortion.
The only thing to do is to explain to the pregnant woman about the tests she wants, to actually perform the tests, to inform her of any disorders or diseases found, and to make sure she understands, but what to do after that is solely up to the couple to decide.
That is why doctors who touch small, powerful lives every day are also greatly lost.
Are you sure this was the right thing to do?"
Wasn't that a life that could have been saved?"
There is a great deal of conflict there because you are in a position to help others.

NIPT testing is not "life-saving"

The number of pregnant women undergoing NIPT continues to increase.
The number of fetuses that test positive increases as the number of NIPT cases increases, and as a result, some pregnancies are terminated.
However, the NIPT test does not select for life.
The NIPT test is only intended to learn about the condition of the fetus, to provide parents, family members, and medical institutions with appropriate support and full backup for the unborn baby, and to help parents understand the disorder and its future.
Although NIPT can detect the possibility of multiple chromosomal abnormalities, parents must first be properly informed about these disorders and prepared to accept their reality.
Bearing in mind that there are many people who are able to live and continue to live for a long time despite their disabilities, we need to first get answers as to what we are going to do in the future, with in-depth counseling.
The answer to this question can never be left to the physician.
Even if a person has a disability, he or she should live, or if a person is concerned about being born with a disability, any feeling is not a mistake, but is a true feeling born out of grief and suffering.
It would be unforgivable for those around us to ridicule that feeling as "selecting life.
Parents making a decision about their future with their child, whom they wanted to see more than anyone else.
It is important to note that behind NIPT, where more and more people are being tested each year, there are those who are experiencing unexpected perplexities as medical care develops.