KEslinger
1 more makes us 4!
- Joined
- May 9, 2011
- Messages
- 496
- Reaction score
- 0
Oh, ladies. I've had a bad week. I had my NT scan last Wednesday, and they called me Friday night to tell me we're high risk for Down Syndrome. I don't know what exactly it's based on yet, but they said at the scan that the scan measurements looked fine, so it must be the blood test results. I'm 31, will be 32 next month. Our risk is 1:20. I'm an absolute wreck about this. The number is just so high! I try to tell myself that it means that there is a 95% chance of no abnormalities, but I'm really terrified.
I have known many lovely people with DS, both personally and professionally. I grew up in a loving church family with several cherished members with DS, and I've been working with adults with developmental disabilities for almost 10 years now. What scares me is seeing their parents and caregivers, and knowing just how hard that life is. I barely feel up to the challenge of parenting a child with average needs...I'm just blown away at the thought of more. I'm just praying I don't need to find that kind of strength just yet.
I'm so scared, and I'm fighting back tears frequently. I don't know how I'm going to wait for the amnio, but we will. My husband is more even-keel, so that helps.
First of all...
This is off of the whattoexpect.com website about Nuchal Translucency Screening..
"When nuchal translucency screening is done
Since NT screening must be done between weeks 11 and 14, an accurate date of conception is important for an accurate result. (A recent study found that NT scans done during week 11 were the most accurate of all because the fold is most translucent then.)
Additional tests: NT screening can be combined with blood tests for more definitive results. For example, your first trimester blood test measures free beta-hCG (a certain type of human chorionic gonadotropin hormone) pregnancy protein called PAPP-A (pregnancy associated plasma protein A). Low levels of PAPP-A early in pregnancy indicate increased risk of genetic abnormalities, heart problems, and preterm birth. The results of these two blood tests plus the NT screening, known as the first trimester combined screening, can be combined into one number that represents the likelihood of having a child with a genetic abnormality.
The results of an NT screen can also be combined with a second trimester blood test known as the quad screen, which tests for four entirely different markers present in the maternal bloodstream. Again, all the results can be entered into one formula, giving you one statistic. This option is called the fully integrated screen. Or you may be given the results of the first trimester screen and the quad screen separately (this is known as stepwise sequential screening)."
"Risks: Unlike more invasive genetic tests, there are no increased risks of miscarriage for the NT screen (or the accompanying first and second trimester blood tests). The biggest problem might be the anxiety they can provoke. False positives are common. So are false negatives. But try to keep it in perspective: The odds of having a completely healthy baby are overwhelmingly in your favor. The NT screen is best thought of as a decision-making tool. Before you decide whether to have this procedure, talk to your practitioner about genetic counseling to help you determine which genetic tests are right for you."
We had decided that we'd do the full integrated screening. And, either way, we'd love and accept our baby. Knowing that it'd be harder and the pregnancy would most likely have a ton more anxiety involved in it, we decided to go through with it anyway. We also decided that we would NOT go through with any further testing (CVS or amnio). We just wanted to know what our risk level was, that way we could be better prepared for any impending childcare, doctors appointments, etc. And, also give us time to "digest" the information and become further informed about caring for a special needs child. I know the risk for miscarriage is super low but for some reason it scared the crap out of me. (My mom had an amnio with me to see if my lungs were good to go early, and I'm still here!) I had read way too much on the internet about people who had positive screens, got the amnio, miscarried only to find out it was a baby with no genetic defects. **DO NOT READ THINGS ON THE INTERNET!** At the same time I did reading and found that people had negative screens and ended up with a baby who had Down's Syndrome.
For me: I got my bloodwork done on the first day possible... bad idea. When the baby measured 1 day earlier it threw off my results and I had to have my blood drawn again for first trimester bloodwork. My NT scan actually added a lot of anxiety (more so for OH). The baby was measuring fine, and the fluid was perfect, but when they submitted my info there was an error. HOWEVER, they weren't telling us anything. They were immediately on the phone with the state like they had discovered I was pregnant with a bomb or an alien that was going to invade the country. After a while OH said something and they said the baby looks fine, and my first levels were good, and what not, but there was an error with the screening. (WTF?!) That's when we learned that because the baby was off by 1 day, so was my bloodwork. Thankfully that was all for me. My second trimester bloodwork came back good, and a few weeks later we got a "negative screen" card in the mail.
A question I have for you, did you only do first trimester blood work, or have you gone in for the 2nd trimester bloodwork? (I should've looked to see if you have a ticker before I commented. Sorry!) My doctor didn't want me to have my second trimester blood work until 16 weeks... that way I'm far enough into the weeks that they want to not have another "error" with my test. They had told me that sometimes your levels can indicate high risk but after the 2nd results come back it can lower the risk a little bit? I'm not sure how accurate that is. They also told me if the first one showed high risk they would refer us to a genetics counselor and we'd be educated on and offered other tests.
Keep us updated, and keep your chin up!