Diagnosis down syndrome : to abort or not to abort? Three lives with the decision

Three women talk about their experiences with the diagnosis of trisomy 21 – about happiness, love and excessive demands. And of the feeling of being left alone.

On Thursday, Germany will make a decision with far-reaching consequences: The Federal Joint Committee will determine whether health insurers will soon pay for blood tests for pregnant women that can detect Down syndrome in the unborn child. So far women have to pay for this early detection themselves. Do they want it to become the standard? It is the dilemma of almost all parents – do they want to know before birth if their baby will have a disability? And what if so? Three mothers report how they decided – and how they live with it.

Birte Muller is the mother of two children – one with Down syndrome, one with "normal syndrome

It was more than twelve years ago when I was pregnant with our first child. I was literally "hopeful" at the time. My boyfriend and I got married and were looking forward to our new life as parents. We didn’t have prenatal examinations because we couldn’t imagine giving up our baby again.

I had no fears of having a disabled or sick child and I don’t think I could have prepared for the shock in any way. Suddenly nothing was the way I had imagined it to be. Everything seemed different and frightened me. But I am still glad that we were able to hold Willi when we found out that he had Down syndrome. For luckily we had our infinitely sweet son Willi, with his pretty, tiny little hands and with his tender cheek to snuggle up to. That comforted us over every pain.

Unfortunately, our son became seriously ill only a few weeks after his birth. It had nothing to do with his disability. Willi became infected with a resistant hospital germ. He needed a tracheotomy and suffered from permanent epileptic seizures. His first year of life we spent in the hospital or for weeks – surrounded by intensive care nurses and medical apparatus – in our apartment. To this day I do not have an answer to the question: Why my child??

I remember well those difficult early days. I had the feeling we were from another planet. I didn’t know anyone who had experienced what we went through. It was incomprehensible to me that the world continued to turn normally, that other people hurried to work or sat in a cafe while my child was severely disabled and struggling to survive. I could hardly go out on the street because I had the feeling that from all the shop windows the pictures of babies bursting with health and their happy mothers were staring at me.

My husband and I, in fact our whole family, this time has bonded closely together. We cried together and – despite everything – could still laugh a lot. Sometimes we even did both at the same time.

I had great fears during this time and shed many tears. In addition, I was burdened by a guilty conscience because of my sadness towards my child. I had slipped into a depression. Maybe it was exhaustion depression, or maybe it was "normal" postpartum depression that wasn’t noticed because objectively there were plenty of reasons to despair. I was helped by medication and slowly we grew into life with a handicapped son, just as parents do who do not have a handicapped child.

In the hospital I met mothers of other seriously ill or handicapped children. They understood my pain and my endless love for my son. That was a great help to me. I saw that we were not the only ones and that life went on even though I could hardly imagine it.

"We actually lead a completely normal life"

What never helped me were books and guides about "our baby in the first year". Whenever I read it, I felt like I was failing. I did learn how important breastfeeding was for my baby. But there was not a word about children with developmental delays in the books.

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The charts that showed me what my child should be able to do – but couldn’t – were accompanied by arrogant texts: As a mother, all you had to do was stay calm, because children would take all the developmental steps all by themselves. But I couldn’t read in the books that for some children and mothers not everything happens by itself and that the smallest step means a great achievement for both of them. One day I threw them all into the hospital trash can.

Today, all this is long behind us. Willi is already twelve and our daughter Olivia ten years old. We were happy that we were able to bring a second child into the world completely without complications. Nevertheless, Olivia turned our lives upside down almost as much as Willi did. Maybe that’s the nature of having children. Willi’s health has been stable for many years, which is a great gift. He is a happy, very joyful child. Compared to other children with Down syndrome, however, he develops very slowly – due to the severe epileptic seizures in infancy. For example, he can’t speak or go to the bathroom by himself.

Nevertheless, we actually lead quite a normal life. So for us at least it is normal. Sometimes we seem crazy to others, but that doesn’t bother me. On the contrary, there is something liberating about it.

More texts on the topic of Down syndrome:

  • Despite criticism from disability associations: Insurers want to soon pay for blood tests for Down syndrome
  • Trisomy test: The blood test will not be covered by health insurance until 2020 at the earliest
  • Debate on trisomy testing: ‘I never regretted it’

However, life is often very exhausting with a handicapped child who loves brass band music or with an unhandicapped child who hates school. The wonderful thing is that the strength I need for our everyday life always comes from the love for my children. Even though Willi may not be able to do much, he can love with all his heart. And what mother of a pubescent child is lucky enough to be shown this love effusively every day??

Recently, a lot has been reported on the topic of early detection of children with Down syndrome during pregnancy. I am always surprised that people want to find out whether "everything is okay" with the baby by means of a blood test. I can assure: People with Down syndrome are fully fine! Our life with Willi is more than okay, even though he is much more severely handicapped than children with trisomy 21 usually are. Our life is happy! Birte Muller

Anonymous, 53 years old, mother of two children, abortion in the 16th week of pregnancy. Week due to diagnosed trisomy 21

The things that have been thrown at me: Nazi bride they have called me, euthanasia they have accused me of. Why? Because I decided against a life with a handicapped child – and above all because I was so naive and believed that one can talk about it publicly in this country. But that was a fallacy. Women who stand by their decision still face massive hostility. And I’m tired of justifying myself. Therefore, what I am about to write down, I will only do anonymously.

At the age of 41, our first child was already three years old, and to our surprise I became pregnant a second time. Our joy was great, of course, because we hadn’t expected it at all. And yet even then I had a strange feeling in my stomach. In the twelfth week of pregnancy, an ultrasound examination then revealed a so-called nuchal translucency of plus 3.9. Everything up to a value of plus 2.5 is okay. If the result is above this, there could be a genetic defect. The child could be born with trisomy 21, 18 or 13. Or with a heart defect, an open back, another of many genetic defects – or it could also be stillborn.

But all this is subjunctive, because the test provides only probabilities, not certainty. I was completely exhausted. The following two weeks, until an amniocentesis could finally be done to clarify the situation, were an up and down of crying, hope and internet researches. And of course the question again and again: Can you do it?? At the beginning, abortion was out of the question. We can do it, was the first thought my husband and I had. But the closer the amniocentesis came, the greater the doubts became.

Because neither amniocentesis nor a blood test can tell us how severe Down syndrome is. Is it a severely handicapped child or is it one that can attend school and later pursue a profession?. On the street you probably see a rather less disabled child. And also the media often suggest that Down syndrome children can lead an independent life. There is of course – but that is only a small fraction. The many children with Down syndrome, who are severely disabled, remain invisible.

"The mental agony was almost unbearable"

What this means should be understood before the birth: Caring for your child is then, when things go badly, your whole day’s content – until you die. I couldn’t have handled it. And who will take care of your child after you die?? The sibling? Is it fair that I burden my son with this responsibility?? I do not find. And finally – even if you can’t tell most people without getting hate mail – a handicapped child would have been difficult to reconcile with our way of life, since we often live abroad for longer periods of time due to our jobs. I was not ready to give it all up. And I was lucky enough to be able to decide for myself.

Inwardly, I was prepared when the amniocentesis brought sad certainty – and yet it hit me like a blow to the head. Now it was final and a difficult step was ahead of us: an abortion. But what I had not counted on was the land of bureaucracy. Germany.

My gynecologist explained to me that despite the medical indication for surgical abortion in the 16. The pregnancy is too late. In this method, the embryo and the lining of the uterus are aspirated through a narrow tube under general or local anesthesia. The actual procedure is finished after about 15 minutes and therefore comparatively gentle.

The alternative, the so-called prostaglandin method, on the other hand, would have been sheer horror for me: First, continuous contractions would have been induced by means of a suppository, so that I would have had to give birth to the fetus while fully conscious. Afterwards, the doctors would have put me under general anesthesia to scrape out the remaining parts of the uterus. I did not want that at all. I was desperate. But wherever I asked, I was told that this was the only way.

Nevertheless, I researched further and finally came across the Beahuis& Bloemenhovekliniek in the Netherlands. At first I was uncomfortable: going abroad for an abortion, that had something of a cure. But the opposite was the case. Everything was highly professional, the staff spoke several languages and of course German. The surgical abortion is performed there until the 18th week of pregnancy. I was ambulant until the 22nd week. I was an inpatient during the first week. There were preliminary examinations, talks with a psychologist and the nurses took care of me touchingly. For the first time I heard some warm, uplifting words.

"One feels like a criminal"

In Germany, most doctors refuse to perform surgical abortions after 12 weeks of age. The abortion is performed at the end of the first week of pregnancy, even if there is a medical or criminological indication for ethical reasons. If the doctor justifies it openly, I think it’s legitimate. Today I know, however, that a trip to the Netherlands would not have been absolutely necessary, since there are also a few doctors in this country who can perform this procedure up to the age of 16. Performing the first week of pregnancy.

The problem is, however, that no one calls them. And doctors are not allowed to write that on their website either. So you would actually have to call every single gynecologist and ask if they do it. And if you try, you don’t get any information on the phone – because the doctors are also afraid of hostility. You feel like a criminal. But I am a grown woman. Why am I not allowed to decide for myself? Because that’s what it amounts to de facto: By suppressing information, the patient’s own decision is made impossible.

So I did the surgical abortion in Holland. I had no physical pain, everything went well without complications – but the mental pain was almost unbearable. I went to psychotherapy three times until the psychologist told me that I didn’t need to come anymore, that I would work everything out through my voluntary work. It was important to me at that time to help women in my situation. And in the meantime, I have also compiled a list of gynecologists who perform late-term abortions. This work was actually my therapy. Slowly I felt better.

Of course it would be best to avoid such traumatic late abortions in the first place. The blood test for trisomies might help. The problem with amniocentesis is not only that it is risky, but also that it is only done after 15 weeks of pregnancy. are possible during the first week of pregnancy. The blood test, on the other hand, is already in the 10th week. week possible.

My abortion was twelve years ago, and this blood test did not exist then. I still think the abortion was the right decision – I don’t regret it at all. Of course I mourned the child and I am still mourning. I planted a Japanese cherry tree in the garden. The pregnancy was from March to June. In this time the tree blossoms until it drops the white petals in June. When I look at the tree, of course I think about it. But it is really true that time heals wounds. Minutes: Frieder Piazena

Anonymous, 54 years old, teacher. Mother of two children, one of them with trisomy 21

My son is twelve years old and has Down syndrome, along with a severe mental handicap. He can’t speak, but he can communicate with some signs. I used to work as a teacher. In the beginning, I thought I would eventually go back to my job. Today I realize that I would not be able to take care of my son and still do my job.

But for me, the strongest cut was the loss of my freedom. I can no longer be spontaneous as long as the child is at home. I am constantly afraid that my son will run into the street or sink in the bog – as it happened to us on our last vacation during a walk. He behaves like a toddler, but this has been the case for twelve years now. You always have to be careful, because he can’t assess dangers. In public, you have to supervise him very closely, always hold him, always anticipate him. At some point you don’t want to watch so closely all the time. But that’s how the future will be, I will always have to take care of him.

I only found out that my child had Down syndrome in the delivery room, directly after the birth. At that time I already had a four-year-old son whose birth was completely uncomplicated. When I was pregnant with him, I also had a nuchal fold transparency measurement done. In my second pregnancy I was already 42 years old. Of course, I was aware that there were some risks due to my age. But my gynecologist did not offer me the examination at all. When I asked about it, she just said that she wouldn’t give me any real information anyway.

Even when I mentioned an amniocentesis, she reacted defensively – it was too late for that now anyway and besides, it was the Christmas holidays. Then, when I inquired at a later ultrasound if it was going to be a boy or a girl, she asked me why I wanted to know that. That was quite strange. Today I believe that she was definitely against abortions and maybe even suspected that the child had Down syndrome. But in the end, my husband and I had also made a conscious decision not to have an amniocentesis. On the one hand, because the examination involves a risk for the child, and on the other hand, because a late-term abortion would not have been an option for me.

"At the beginning I thought, "You can do it"

In retrospect, it would still have been important to know that my son had Down syndrome. The pregnancy would have been better supervised and we would have gone straight to the university hospital for the birth. In the end, we do not know today whether his severe disability was caused by Down syndrome or by problems during pregnancy and birth or during transport of the baby to the university hospital – complications that could perhaps have been avoided.

It is good that there is this blood test now, because you can think about it at an early stage of pregnancy, whether you can manage it and what support is available. All women should have this chance, regardless of whether they have the money for a test or not. Therefore, this examination should also be paid for by the health insurance companies.

But no test can tell how strong the Down syndrome is. At the beginning I thought you could do it. He is being nurtured now and you are getting everything out of him that he has in terms of potential and that will be fine. In the meantime, I have realized that he simply has a very low potential. And if there is little, then even promotion will not help. But it took me quite a long time to realize this – it was like a fall in several steps.

It’s like Sisyphus. Teaching our child is a bottomless pit. You have to be very strong psychologically to get through the situation reasonably well. It’s just incredibly annoying to live with this kid.

My son cannot speak, but communicates with some gestures. If he wants to go swimming, he makes the appropriate gesture for it. Or if he wants to eat bread or yogurt, he can show that too. But he also makes sounds which he repeats constantly and which are unbearable for my ear – and they become louder and louder. When we are in public, want to go out to eat together, it is total torture for me. But we’ll do it anyway. Everybody’s looking, everybody’s turning. But I somehow endure it.

A great support is his school. He attends a special school with a focus on mental development from 8 a.m. to 3 p.m. and is very well cared for and supported there. He could never go to an inclusive school, he would be completely overwhelmed with that. He has to be in a very small class and still needs an inclusion aide to guide him and deal with his challenging behavior. But outside of school, there are few care options for behaviorally challenged children like my son. If we can get a place for him, my son will be in short-term care for a few days during the school vacations. But just for a few days in the whole year.

What my son’s future looks like? I can’t tell what’s coming, but definitely nothing good. At the moment I can’t imagine to hand him over to the dormitory later, where he would probably have to be sedated with pills due to the low care ratio. Of course I don’t want that either. And there’s really nothing else. That’s why I prefer not to look into the future. Minutes: Frieder Piazena

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