Why I kept my Down Syndrome baby

ELIZABETH SCHILTZ
Last updated 13:22 29/08/2014
Baby

A MOTHER'S LOVE: Elizabeth Schiltz with her son Peter.

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PETER'S KAROTYPE: The arrow in the karyotype points out that Petey’s cells have three, rather than the usual two, copies of chromosome number 21.

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My Oma was born in a little village near the town of Hadamar. Hadamar sits in the shadow of a tall hill called Mönchberg - Monk's Mountain. On top of that hill stands an old Franciscan monastery, which was converted into a state hospital and nursing home in 1803.

In 1940, however, that hospital was turned into one of the infamous Nazi 'killing centres'. These were the six institutions spread all over Germany where first children, and later also adults, with disabilities such as (in the language of those times) 'idiocy and mongolism (especially when associated with blindness and deafness), microcephaly, hydrocephaly, malformations of all kinds, especially of limbs, head, and spinal column, and paralysis, including spastic conditions' were taken, systematically starved to death or gassed, and cremated.

Oma rarely spoke to us about her experiences during the war. But we know that she was affected by the experience of living in the shadow of Mönchberg. I was the fifth of sixth children. Oma loved us all very dearly, but she had a favorite, and she never made even the feeblest attempt to hide it. The other five of us were all her Silberfische - silverfishes. My older brother, Jim, was her Goldfisch - her goldfish.

Jim was born 'mentally retarded'. When he was born back in 1952, the medical professionals counselled my parents to send him to live in an institution. My parents refused, and with much work and love, they taught Jim to do all those things that the medical professionals told my parents he would never do, like talk and walk.

Jim graduated from high school. He is bilingual - fluent in German as well as English. He reads the newspaper everyday. Jim has held the same full-time position in the kitchen of a country club for twenty years now, and does not receive any sort of public assistance. Jim is known around our family as 'the human jukebox', for his uncanny ability to remember the lyrics to any song, from any era, by any artist.

In some sense, although we did not live in the town of Hadamar, I think that all the kids in my family grew up in the shadow of Mönchberg as well.

I cannot remember a time when I did not know that the first targets of the Nazi's gas chambers were people with disabilities. I cannot remember a time when I did not know that my brother Jim would probably not have been allowed to live if he had been born just ten years earlier, in the same hospital in Frankfurt, Germany, where I was later born - a former German military hospital in which my mother noticed, the first time she was there, swastikas carved in the borders along the top of the walls.

I grew up with a visceral awareness of the potential within humanity to decide that it is legitimate to kill certain categories of people because of the costs that their life imposes on society. I grew up loving a brother who I knew was in one of the categories of humans that the Nazis had determined possessed a lebens-unwertes Leben - a 'lifeunworthy of life' - a life whose cost to society exceeded its worth.

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But that was years ago and far away, right? I grew up, moved to the United States for college, went to law school, then plunged into my life as an all-American working mum, practicing law and raising kids in the modern, progressive metropolis of Minneapolis, Minnesota. And then something happened to me, and my life changed, and in so many ways now, on so many days, I feel as though I am still living in the shadow of Mönchberg.

What happened was this. When I was about five months pregnant with my third child, Peter, I got a copy of this (pictured).

This is the karyotype of one of Petey's cells that was floating in amniotic fluid extracted from my womb by a big needle during an amniocentesis. The arrow in the karyotype points out that Petey's cells have three, rather than the usual two, copies of chromosome number 21. This indicates that he has an incurable chromosomal condition called trisomy 21, or Down syndrome, or, in the old-fashioned language of the Nazi regime, 'mongolism'.

The medical professionals I was dealing with during a series of tests were not trying to find information to help me protect the health of my baby. Unlike the tests for anemia or HIV, there is little that can be done about the conditions that these tests were attempting to identify.

These tests were offered for the purpose of bestowing upon me a special societal privilege to choose to abort my baby. That karyotype could have been my ticket to a guilt-free, utterly justified, absolutely legal abortion. If the technology had existed in the 1940s, that karyotype would almost certainly have been a ticket to Hadamar.

As someone who has always been pro-life, I did not accept these tests for the purpose of obtaining that 'privilege'. I just wanted to know, partly in the vain hope that I could be reassured nothing was wrong, but also so that if I could not be reassured, I could at least be prepared. I am a nerd; if I was going to have a baby with Down syndrome, I wanted to read every possible book on the subject before the baby came.

Experiencing this testing sequence first hand, however, gave me some personal insights into the potentially pernicious effects of the prenatal testing process. The tests are all offered in the guise of 'reassurance', along with a battery of other tests.

All of these tests carry with them the implication that the responsible mother can and should do something constructive with the results: take extra iron if she is found to be anemic; take AZT if she has HIV; or abort the baby if he or she has Down syndrome.

If you lack the financial or other resources to raise a child with a disability, you could easily be swayed by an argument that the knowledge you now possess about the child gives you the responsibility to do something constructive to solve the problem, by aborting the child.

Now, this argument could obviously be a powerful incentive for a person to 'choose' to have an abortion. Going through this process personally made me acutely aware of its potential power. But this was not the aspect of the experience that really surprised me. What really surprised me was that people did not stop making this argument once I rejected it during the testing phase.

When I started telling people that the baby I was expecting would have Down syndrome, I had colleagues ask me incredulously, 'Why are you having this baby?' While there was something rather creepy about being asked that question directly - by someone staring at that big belly of mine, while the baby kicked inside - it was still not too difficult for me to deal with. I was comfortable defending my position that I didn't believe in abortion, that I didn't think I did have any choice in this matter; I was still in familiar, pro-life territory.

But I left that familiar territory the moment that Petey was born, and I found, to my great surprise, that society still kept asking that question: Why did you have this baby?

I have had people react with marked surprise when they hear that I knew Petey would have Down syndrome before he was born.

Though they do not ask aloud, you can see the question in their eyes: 'If you knew, why did you have the baby?' What's buried in that question, what's buried deep in their eyes as they ask it, is the perception of my son as 'a choice' - specifically, my choice - rather than as a unique human being, rather than as a fully-fledged member of the human race.

What I see in their eyes is the lingering shadow of Mönchberg that sometimes keeps me awake at night. I worry that the joint availability of tests and abortion seems to be eroding societal consensus about our collective responsibility for vulnerable people - people with disabilities whose conditions were or could have been diagnosed prenatally, or even people born into difficult family situations or social structures.

I am very frightened by the emerging attitude that if a woman exercises her 'choice' to have a child who can be identified in advance as 'vulnerable' for some reason, the woman herself bears the responsibility for dealing with that vulnerability.

In other words, if the 'cost' of a certain life is going to be more than its 'worth', someone has to make up the deficit. The assumption seems to be that if you 'choose' to impose that cost on society by having a baby you could so easily have aborted, you should pay the price.

Elizabeth Schiltz is an Associate Professor of Law at the University of St. Thomas School of Law in Minneapolis, Minnesota, USA.

Edited extract from Defiant Birth: Women Who Resist Medical Eugenics, published by Spinifex Press.

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