MIRROR editor Sandra Schulz learned in the 13. Week of pregnancy that she is expecting a daughter with a disability. Today she is the mother of four-year-old Marja.
I made the blood test itself, and I am a cash patient who is happy about anything that pays the health insurance. Nevertheless, I think it’s wrong that the blood test for chromosomal disorders Fund performance.
I have done long hard time to develop in this discussion, an attitude. Because I know how pressing this question may be: Is the child growing in my belly approach, have a disability?
Also, I had no power, the uncertainty is unbearable. It was not originally even to my own restlessness, which drove me to the Test. Instead, I get to the beginning of the brochures from my gynecologist, in which potential studies were listed. It seemed to me to be so relatively normal that one decides to take one of these Tests.
Of course I had thought of this before, along with my husband, whether we would have a child with down syndrome. I thought I was Mature and capable of decision-making enough to decide if it needs to be. Today, I would say: I have overestimated myself in my decision-making ability.
The Need was so inhumanly large
The Need, in the me, the so-called “striking result” crashed, was so great, so inhumanly big, like I can you, I never previously would have imagined. At the time I noted in the pregnancy, the sentence: My freedom tortures me.
Suddenly, I was alone, alone with a responsibility that I believe today, that no man can wear it. Need to wear with but then. There is to this small, casual peaks in the Arm, the point of no Return. And the step is made fast, sexy, quickly – unlike an amniocentesis, the question is: Is the Knowledge of a possible disability, so much so that I don’t want to take the very small but existing risk of a miscarriage?
The explosiveness that is in the prenatal diagnosis, you will understand only if one is affected. The child in your belly is there, it was – up to this eye-catching result – longed for and desired. And suddenly the question of whether this desire of the child to come due to the properties that you have not wanted, to the world.
In this Emergency, women are prepared today are very bad. Although there is a lot of advice, but hardly anyone goes there before he starts with the prenatal diagnosis. I, too, was afterwards there. Therefore, the “intensive consultation” by the Federal Joint Committee requires, at least, correctly.
My experience is, however, Not the medically-factual information, as a human geneticist or a doctor performs them, is the Key. The importance of a psycho-social counselling, which creates space for questions such as: What will happen to your partnership in an eye-catching result? Are you of an opinion? Did you support the family?
Knowledge has a price
We have all not forgotten in our knowledge-based society, Knowledge is good per se. Not even neutral. Knowledge has a price. The Doctors have to go clear, even, and especially, by pointing before the blood test to other competent companions to consultants, midwives, psychologists. A blood test that is, in certain cases, Fund performance, reinforcing the impression that almost all of the Pregnant women is not expected to take this Test. It is good, reasonable, normal, to test his child in the womb and through lights. He suggests that the Test is a Service of your insurance company, which says it is good with you.
But what I want to Know, how much I Know can’t stand, Know how much will my partnership – all of this must remain an individual decision. As well, as well as the decision for or against a disabled child an individual decision. I’m not a radical abortion opponent. I understand that there may be situations in which you choose differently than I did it.
Nevertheless, the change in perspective is as the mother of a child with down syndrome is a radical. Because I only now realize that I have asked myself in the pregnancy the wrong questions. I knew the diagnosis, but I am not able to imagine how a life with down syndrome – for the child and for the family. Some of what I’ve feared, has come true: What he works very hard with me today, is not the disability of our daughter, but the bureaucracy around the disability. And that you always have to fight again.
I will love my child? An absurd question!
During pregnancy but have me intrigued with questions like: Will I love my child? An absurd question, from today’s point of view. We will be happy? I have now met many parents of children with down syndrome – it is ordinary families are so happy, or on some days unhappy, as it happens in families now.
And there is nothing that I would be more convinced than the fact that our daughter lives happily. If someone palms off on living on the Radio, starts Marja to dance. When your favorite song comes up, gets you excited Again! To be precise, she speaks vaguely. She calls so: No-ma! But is that important?
So why we want as a society expectant parents convey that it is a disaster if you have a child with down syndrome? A risk, in front of the protect you need to? Why stir up this fear of a life with a disability, a fear that we can face apparently only by the health insurance company pays for a Test that offers the possibility to opt-out of such a life?
We should not convey, as a society, a different message than this: Wanted and welcome only perfect people are! Because of this blood test does not therapy different than other areas of prenatal diagnosis. This Test only leads to a question: termination of pregnancy – Yes or no?
I believe that it will remain that the Insurance applies only in “narrow circumstances” in the case of high-risk pregnancies. I’m afraid that the “justified individual cases”, of which the Federal Joint Committee speaks to us today, are only the beginning of a development. And that tens of thousands of individual cases, will change our society and our image of man. The blood test insurance is the direction in which the prenatal diagnosis is developing as a whole.
No TÜV in the womb
It will be possible in the future to diagnose other genetic defects and diseases in the womb. But how to decide? On the basis of which criteria? When is a life good? Or good enough? How long must we wait? How much pain is reasonable? How are you supposed to decide all of this? For a other people? I’ve learned a lot through the time with our daughter. Among other things, this: That it is presumptuous to decide for other people what a happy, what is a desirable life.
I don’t want to live in a society that expects to be a child in the womb a TÜV under before you bring it to the world. Because deals expectations are in truth. And not just a friendly Service from their insurance company.