31 for 21: Wanting ‘Normal’?

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?

22 Responses

  1. I stumbled upon your blog in 2007 when, during our first pregnancy, I was given a positive (1:171) result for Down Syndrome. We were shocked! This was our fourth pregnancy, first live one having had 3 miscarriages prior to this one. Just like you, I did the test just to put another check on the list not expecting a positive result. We were shocked. We were absolutely against termination, BUT we needed to know. To be prepared, to be educated, documented. We needed to know and at the same time we didn’t want to undergo Amnio due to the risk of yet another miscarriage. I did not want to lose my baby. So we reasoned it out that this was OUR baby, no matter what. I remember telling my husband the exact same thing you wrote “If you knew a child would end up disabled in any way in the future, would we give him/her up now?” the answer was NO. It was the baby chosen for us. So on we went with our pregnancy, not knowing whether our baby was going to have Down Syndrome or not. I did a lot of research about Down Syndrome and newborns (that’s one of the ways I ended up discovering your blog and never left). Rebecca was born a typical child. However, I am glad for the awareness I have received through the many articles and blogs related to DS. It opened me up to a world that I had never explored in depth before. Now, each year I post on my FB status on March 21 that this is DS world awareness day. Rebecca has a little friend in pre-school with DS, she doesn’t know any difference between her and this girl and so it should be! Thank you for educating me and for all the awareness! I love your blog!

  2. You know I so agree with your post! Thanks for linking to mine; glad you understood what I was trying to convey!

  3. WOW. This is an awesome post! So glad I found you! (through doozedad’s comment section, lol:))

  4. Great post! I agree with everything you wrote here. There are no guarantees in life…People who are striving to ONLY have perfect children, shouldn’t be parents!

  5. Thanks for being a part of the blog hop! I do have a WP linky too but I didn’t post it. I’l remember next time!
    Good post! One thought that got me through after Eslea’s diagnosis was…how would I feel if something happened to my oldest, Emma, and she was no longer “normal”? Would I love her less? Would I want to give her up? Of course not.
    Realizing that people do not have to be perfect is such a relief! This break through led to so many wonderful opportunites in my life. Including the awareness that Eslea is PERFECT just the way she is. A child can be different and not different and perfect all rolled into one!

  6. Greetings from Texas. Love this post. There are no guarantees in live as you so beautifully illustrated with your above story. -Anna (Ellie Bellie Bear)

  7. Great post and you have beautiful children! Thank you for visiting my blog! I will be back to visit yours again!

  8. I’ve had these same thoughts: prenatal testing can only scream for a minute fraction of things going “wrong”. I’m glad I didn’t have it either, since having a great pregnancy was wonderful. And I have to say it’s been pretty wonderful since she’s been here, surprise extra chromosome and all! Happy to find you on the blog hop!

  9. My son, Nathan, was my fourth pregnancy – I had a first trimester miscarriage and lost a daughter at 20 weeks prior to my daughter’s birth. With that child and with Sarah Kate, I did the triple-screen. In my mind, I wanted to be “prepared” in case of bad news. Sarah Kate was born premature due to a placental abruption and now cerebral palsy – something no blood test could have predicted. With Nathan, both Mr. Andi and I were adamant: no tests this go ’round. We were blissfully unaware until Nathan arrived that he was sporting that extra chromosome, and I’m so thankful that I was able to be free of worry during those nine months.

    Visiting via the blog hop!

  10. thanks for stoppin’ by:)

  11. GREAT post! So glad you hopped over cause I wouldn’t ever have found you otherwise 🙂

  12. Blog hopping tonight. So glad I found yours. I read the Denmark stat this week and I felt sick. Hailey was my 4th pregnancy. We have two boys and then had a miscarriage before Hailey. We declined all testing. I’m glad because we plan on Hailey being our last baby (this baby factory is closed). It gave me the opportunity to enjoy my last pregnancy without the worries. If I would have known sooner, I would have spent too much time worrying, researching, etc. I hope that if more people choose this new test, they use it for preparation and not the alternative.

    Vince is quite the handsome little man!

  13. Very well stated point! Thanks for finding me via the Blog Hop. I love your blog!

  14. Thank you for hopping by my blog today! Vince makes me smile – I have a lot to look forward to with my Ben. It’s a small world. I was just planning a vacation to southern Germany and Austria yesterday:)

  15. just “hopping by” 🙂 great post.

  16. Blog hopping by 🙂

  17. Blog hoppping (late). Great post. I agree 100%.

  18. Blog hopping here too- and LOVED this post!! I absolutely agree also.

  19. Dear ?
    Hi! Enjoying all the info. Vince is absolutely a prince. My princess Sara is 22 months old. Recently we did an eye check and she was prescribed glasses. We are trying to get her to wear her glasses. Any tips? The hand exercise for speech seems interesting. Can you please clarify in detail how its done.
    Thank you! Sincerely, Rachel

  20. well said 🙂 I am not sure where you are now, just started reading, but I am guess not in the states since you used Celsius and meters verses feet, but I used to live right outside Detroit, MI too 🙂

  21. Hi there! Blog hopping really late, but I am determined to get to them all! What a great post. How right you are about no guarantees in life. I chose not to do an ammnio and I enjoyed every moment of my pregnancy save the last two that had me on bedrest. Thanks for sharing!

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