SPIEGEL editor Sandra Schulz learned in the 13th week of pregnancy, that she expects a daughter with a disability. Today she is the mother of four-year-old Marja.
I did the blood test myself, and I'm a cash patient who enjoys everything the health insurance pays. Nevertheless, I find it wrong that the blood test for chromosomal disorders should be cash.
For a long time, I have had a hard time developing an attitude in this discussion. Because I know how urgent this question can be: will the child growing up in my stomach have a disability?
I, too, had no strength to endure the uncertainty. It was not originally my own unrest that drove me to the test. Rather, right at the beginning I received brochures from my gynecologist listing the possible examinations. It seemed relatively normal for me to decide on one of these tests.
Of course, I had previously thought, along with my husband, if we would get a child with Down syndrome. I thought that I was mature and able to make decisions, then decide if I had to. Today I would say: I overestimated my ability to make decisions.
The need was so inhumane
The hardship to which the so-called "conspicuous result" plunged me was so great, so inhumanly great, that I could never have imagined it. At the time of pregnancy I wrote down the sentence: My freedom tortures me.
Suddenly I was alone, alone with a responsibility that today I believe that no one can actually carry it. But then you have to wear it. There is no going back after this little, casual spades in the arm. And the step is just done quickly, seductively fast - unlike an amniocentesis, before the question is: Is the knowledge of a possible disability worth so much that I want to take the very low, but existing risk of miscarriage?
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The explosiveness of prenatal diagnosis can only be understood when one is concerned. The child in your belly is there, it was - until this striking result - longed and desired. And suddenly the question arises as to whether this wishful child should not be born because of the characteristics that one did not want.
Today, women are extremely ill prepared for this need. There are many counseling centers, but hardly anyone goes there before starting prenatal diagnostics. I too was there afterwards. That is why at least the "intensive consultation" that the Joint Federal Committee calls for is correct.
My experience, however, is that it is not the medical and factual information, such as a human geneticist or a doctor, that is the decisive factor. Important is a psycho-social counseling that creates space for questions such as: What happens to your partnership in case of a conspicuous result? Do you agree? Do you have family support?
Knowledge has a price
We all have forgotten in our knowledge society that knowledge is not good per se. Not even neutral. Knowledge has a price. Doctors have to make that clear, also and especially by referring to other competent attendants before the blood test, to counselors, midwives, psychologists. A blood test, which in certain cases is cash benefit, reinforces the impression that the pregnant woman is actually expected to take this test. That it is good, reasonable, normal to test and examine your child in the womb. He suggests that the test is a service of your health insurance, which means well with you.
But how much knowledge I want, how much knowledge I can endure, how much knowledge my partnership can handle - all this must remain an individual decision. Just as the decision for or against a disabled child is an individual decision. I am not a radical abortionist today. I understand that there may be situations where you decide differently than I did.
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Nevertheless, the change of perspective as a mother of a child with Down's syndrome is a radical one. Because I only now realize that I asked myself the wrong questions during pregnancy. That I knew the diagnosis, but I could not imagine what life with Down syndrome is like - for the child and for the family. Some of what I feared has come true: what is haunting me today is not the disability of our daughter, but the bureaucracy surrounding the disability. And that you have to fight again and again.
Will I love my child? An absurd question!
But during pregnancy questions like: Will I love my child? An absurd question from today's perspective. Will we be happy? In the meantime, I have met many parents of children with Down syndrome - they are normal families, as happy or sometimes unhappy as families are.
And there is nothing that I would be more convinced of than that our daughter likes to live. When someone turns on the radio, Marja starts to dance. When her favorite song comes, she shouts enthusiastically: Again! To be precise, she still speaks indistinctly. So she calls: No-ma! But is that important?
So why, as a society, do we want to convey to expectant parents that having a child with Down syndrome is a disaster? A risk to protect yourself from? Why are we fueling this fear of a life with disabilities, a fear that can only be met by the health insurance company paying a test that gives them the opportunity to decide against such a life?
If we as a society do not convey a different message than this: Wanted and welcome are only perfect people! Because this blood test does not open any therapy - unlike other areas of prenatal diagnostics. This test leads to only one question: Termination of pregnancy - yes or no?
I believe that it will not remain that the cash benefit is only under "tight conditions" for high-risk pregnancies. I am afraid that the "justified individual cases" that the Federal Joint Committee is talking about today are only the beginning of a development. And that tens of thousands of individual cases will change our society and our image of mankind. The blood test as a cash benefit defines the direction in which prenatal diagnosis develops overall.
No TÜV in the womb
It will be possible in the future to diagnose other genetic defects and diseases already in the womb. But how should one decide then? Based on which criteria? When is a life good? Or good enough? How long does it take? How much pain is reasonable? How should one decide all this? For another person? I learned a lot through the time with our daughter. Among other things, this: that it is presumptuous to decide for another person what a happy life is worth living for.
I do not want to live in a society that expects you to have your child undergo a MOT in the womb before you give birth. Because offers are in truth expectations. And not just a friendly service of your health insurance.
