I am not sure I ever blogged about prenatal testing and screening for such things as Down syndrome in pregnancy. So let me tell you what I did in my two pregnancies.
With Vince, my first pregnancy we lived outside Detroit, MI. I was asked if I wanted any testing and a number of brochures were put in front of me. I decided on the triple test (combined ultrasound/blood screening test). Everything was perfectly fine. As I knew it would be before I even took the test. In my mind the test was simply done to put yet another check mark next to some check up point in the pregnancy to do list. See I was young, only 27, thise things only happened to older people. Or at least not me.
I am VERY thankful for the erroneous results as this allowed me to fully enjoy the magic only a first pregnancy can bring. Naturally, I was TOTALLY in shock when I was told three days after birth that most certainly did our son have Down syndrome.
With Edgar we had a different strategy We were both aware of the possibility of one of us being a balanced carrier of the translocation 21;21 gene (in the sex cells as we had blood tests that showed we were at least not carriers in all blood cells – you can read here about what I am talking about). We decided against any prenatal testing, as it would not make a difference. What we did do was having an advanced organ screen to see if there were and organ issues that would have an impact on which hospital we would do the birth at (i.e Linz for heart issues, Graz for stomach etc). Everything was fine during the screening.
I understand that getting a positive test result during pregnancy is devastating. I understand that many people choose abortion, but I understand this only because it is based on information that is most often given by people, most often hospital crews, who are delivering not up to date information and sometimes not true information. I loved this The Perks of Down syndrome that I read this morning from Michelle (please click and read, she puts it very well), first a list of all that MAY or MAY NOT happen to your child, but then a list of things, all positives on what WILL happen to you and your child.
I am certain that if the right information would be available to pregnant women finding out the baby they are having has Down syndrome would be a lot lower than the current termination rate of 90% (meaning 90% of people who are pregnant and find out their unborn child has DS choose abortion) had they only had access to the right information. That is just sad.
Now I am getting to my point. Apparently we want to have ‘normal’ children. We as in society. There are a lot of discussions, TV shows, articles etc about this. Recent scary documentation from Denmark shows that by 2030 no one will be born with DS due to heavy prenatal testing and very high termination rates. That scares the crap out of me. Still it is there. I read stories in the newspaper and I am scared of the comments in the comments section arguing most often for that these individuals just cost money, can’t live their lives to the fullest, are a burden and on and on and on. And there are the natural number of pure jackasses that you just have to ignore due to their own stupidity. Still words hurt.
I was riding the bus home after my colonoscopy this morning (which by the way was fine), about half way home a man came on the bus with his assistant, helper, not sure what the correct word is? I sat right where he stood, and asked if he wanted to sit down? I could tell he had some kind of something (lack of a better explanation?). He wanted to stand. Than he turned to me and we started talking. He spoke very slowly and his articulation was pretty off, and he was mumbling. He told me he had been in an accident. When he was 14 he fell out of a window and fell 12m to the ground. He showed me how he could only move his right had by lifting it with his left hand. He also walked very slow and with a limp.
He told me that he was on his way for a milkshake and hoped to meet a girl. I told him to try finding one via the internet which he liked the idea of. He told me he had gone to Hirtenkloster, the school we are thinking about for Vince, and he told me he worked in an arts and crafts place for adults with special needs.
I do not know the details of his accident.
He did tell me he was ‘normal’ before the accident, and he had gone to one of the prestigious private schools in Graz.
He is 34 now, he told me that.
He does not have Down syndrome.
No prenatal testing would have shown anything out of the order.
My point? You can choose to eliminate your baby at 20 weeks, or maybe up to 25 weeks into your pregnancy if you want to. Apparently that is the law, and therefore your right as a citizen in some countries. But the test does not protect you after birth. Life is there and accidents can happen to anyone. Vince birth has affected my friends in, to me, a very positive way. Many have told me that they have chosen not to do prenatal testing because it would not matter to them. It warms my heart. And it warms my heart even more when they tell their friends and spread the message. Prenatal testing is available but before you do it, think of why you do it and what you would do with a possible positive result. When are you willing to give up your baby? Because it has DS? What about if your kid turns out ugly? Or with huge ears? Or what about if at 14 years of age, your kid no longer can continue its previous ‘normal’ life and at 14 years of age becomes a ‘total care package’, would you give it up then?
Filed under: Daily thoughts, Disability, Down Syndrome, Just Life, Preggers, Robertsonian Trisomy, Translocation Trisomy 21 Tagged: | blog hopping, disability, down syndrome, family, pre-natal testing, pregnancy, translocation 21, Trisomy 21