Hi PurpleHaze - I hope I can help you a little based on my experience. I am 35 now but I was 23 when my 2nd daughter was born and she was born with Down Syndrome. (She's 11 and just started 6th grade today! Where does the time go?!) First let me say that karolyn is exactly right - the nuchal screening is simply a noninvasive way of "helping" you decide if you want further testing (with higher risk involved). They also do the bloodwork that is supposed to help determine your chances/odds of DS. (By the way the bloodwork is known to have a high # of false positives.) Amniocentisis is the only way to determine with 100% certainty before birth. As most of us know this comes with pretty significant risk to the baby. I want you to understand a few things though. My pregnancy with my daughter, except for hyperemesis gravidarum (severe ms), was very typical. I "passed" all of the tests with no concern. I had several ultrasounds throughout due to complications in my 1st pregnancy and my dr wanted to be extra cautious. NONE of my ultrasounds or bloodwork showed any reason for concern. When my daughter was born she passed her Apgars with 9's and seemed perfectly healthy. However, there was something in her facial features that seemed a little "off", but the nurses assured me she was healthy and there was nothing to worry about. About 2 days went by when a dr I had never seen before came in and told me that "We believe there may be a problem with your baby and we would like to do some tests." (All while he's carefully inspecting every inch of her.) Of course I say " What problem and what tests?" He was very evasive and wouldn't give me a direct answer, just said he didn't want to say yet and cause me unneccessary worry. (REALLY??) Anyway I over heard him tell the nurse to have a alpha fetoprotein test done. I immediately remembered reading during my pregnancy that this was for DS. We waited an entire (seemingly endless) 2 weeks for the results of the chromosome testing before we were told that our daughter did, in fact, have Down's Syndrome.
The most difficult part of the entire thing (even until now) was the shock, feeling blindsided by the whole thing. No chance to learn about Down's Syndrome before she came, etc. There is no question that we "mourned" the daughter we thought we were going to have while adjusting to the new reality. We were absolutely blessed from the beginning because my daughter (Josalyn) was born with no serious heart defects and no gastrointestinal issues that required surgery. So once we got the diagnosis I threw myself into learning everything I could about DS. And yes, there is no question, Joslayn requires a little extra time , attention, help. My daughter's largest delay has been her speech, which is something we still struggle with. Yes, she gets speech therapy, occupational therapy, physical therapy. Yes, she sees the doctor more than my other children. Yes, she's 11 and still needs help tying her shoes or things like that. What no one tells you is how much like "other" children kids with DS are. I don't speak to her any differently than my other girls. She is adored in school, has many friends , and is the kindest kid you'll ever meet. She loves to dance and sing. Loves Selena Gomez and Justin Beiber. Loves pretty clothes. Really loves ice cream.
Anyway my point is that even though I know how hard it is to understand until you are the parent of a child with DS,
there is nothing to fear from a diagnosis of Down's Syndrome. I realize we are more fortunate than some because as I said before she has a healthy heart and no surgeries. But I know 2 people who's baby's were born with severe heart defects without DS. These are things that can happen regardless. If I had known before she was born I would have been better prepared, yes. I could have learned before she joined us here on the outside.
But other than that, it would not have changed our journey at all. Yes, there are difficult times, things that will always bother me. She'll never have a drivers license, probably not have children. (Almost definite that her children will be born with DS also). People that will never give her a chance. These are no different though, than fears that I have for me other children. (Different things, but same feeling)
Anyway I'm sorry that this became so long but I want you to know that the tests are in no way something you should depend on . And the results don't need to be feared. Trust me , DS or not you will love your baby exactly the same! He/she will be a member of your family just as much as every one else!
xx
https://www.theblaze.com/stories/move-over-99-meet-the-loveable-10/
