Scared

Summer0715 · July 2011

My doctor just called and told us that there were some "concerns" with my blood work and they set up an appointment with a genetics counselor for first thing Monday morning. She indicated that while my risk factor for downs was low given my history, age etc. the test came back higher than acceptable "cut-offs" and that she didn't want to waste anytime given I will be 20 weeks next week. She also suggested skipping the more intesive ultrasound and going right to the Amnio.

I guess what I am here to say is that I am scared and want to know if I should be worried about how quick this is happening?

I'm sure I should have asked her about a million questions but I didn't because I was so caught off guard by the call.

kcvasquez · July 2011

Many, MANY times these tests are completely wrong. I had a friend who went through her whole pregnancy worrying her baby had downs syndrome and she gave birth to a perfectly healthy baby with no sign of it. I wouldn't worry about it until you actually have something to worry about! I know it's easier said than done though. Thoughts and prayers for you!

lacyj3 · July 2011

I opted out of the blood tests because my doctor told me many times there are false positives. We didn't want to be stressed out and worried for no reason. I'm sure everything is fine.

ImAnRN · July 2011

what testing did you have done? I had a sequential screen and was flagged very early on (at 12 weeks) for 1:18 of T21 and 1:75 for T18 because of blood work. I did meet with the genetic counselor and found that more overwhelming than anything. They just asked about our family history and then said, "If the test is positive, will you terminate?" I sobbed a big, "I DON'T KNOW!" I felt talking to my Doctors made me feel better. The genetic counselor I met with had a degree in biology and it was very "technical." They gave me no silver lining which was very hard for me. This may not be your experience, but I was very unaware walking into my meeting.

They did tell me that there is about a 5% false positive rate... the problem being is that it's based on STATISTICS and there are not enough stats to declare these tests conclusive. About only 1% of women that test positive will actually have a baby that is positive for a genetic problem or neural tube defect.

I felt VERY scared and kept saying, "Why is this happening to me!?" I felt as if I was being "set up" for something to be horribly wrong with my baby. I opted to have a CVS done immediately following my "counseling." I was terrified for all the reasons you probably are.

I know the CVS has a higher rate of miscarriage, etc. than an amnio, but at the time, I needed to know. My insurance did not cover the rapid FISH results and I paid $500 out of pocket for quicker results. 2 days later, my phone rang... "Everything is fine, and you're having a little girl."

I'm so sorry this is happening to you. Give your doc. a call if you need too. I called mine about 4 times and then they brought me in face to face to "talk." It made me feel much better. You can always message me too. Just try to stay as calm as possible this weekend... easier said then done, right? I will be thinking about you!!!!!!!!!

NickaDee07 · July 2011

My doctor told me that these test were very inaccurate. Many times they say one thing and it's the opposite. An amniocentesis is dangerous and has risks like losing the baby. Maybe ask to re-take the test first? Or opt out of the test for now.

And, what doing she mean she doesn't want to waste any time cause you're already 20 weeks? Does she mean terminating the baby because of down syndrome?

ImAnRN · July 2011

https://www.americanpregnancy.org/prenataltesting/amniocentesis.html

Do what is best for YOU regarding the amnio...

miababy · July 2011

These tests give false positives SO often, that's why I opted out of them this time. My OB even agreed with me that they usually just end up causing unneeded stress. I've had several friends who's blood test indicated a high chance of downs and their babies were all just fine. It's surprising that your doctor recommending going straight to the amnio. My doctor told me that the 20 week ultrasound will pick up a large majority of downs and other problems, which was another reason he agreed that I didn't need to worry with the blood work. For me, an amnio just increases the chance of m/c. I would never terminate the pregnancy if I found out something was wrong with the baby, so I would only do a amnio as a last resort (like if there is something they could do for the baby before it was born). That's totally your choice though, b/c we are all different. Try not to worry to much though! Good luck!

shupertj09 · July 2011

I can definately understand why you are freaking out, but there are a couple of things to consider. I am not sure what blood test they did but when I had my quad screening, it advised in the pamphlet that falsa positives do happen and it does not mean your baby had a genetic disease. In fact when my sister was pregnant with her second child, they told her, he was going to have downs however they did a 4D ultrasound and there were no markers.

The second thing is that there is a chance of miscarriage when you have an amnio. In my sisters situation the doctor continued to push for an amnio even when the 4D ultrasound showed everything was normal...she opted to not have it and my nephew is perfectly normal.

I would ask myself these questions in you situation:

1. Is knowing worth the risk? 2. Will it make a different as far as following through with the pregnancy? 3. Will it drive me crazy not knowing...basically ruining the pregnancy experience for me? 4. How will I feel about getting the amnio, if it causes me to miscarry?

From what I understand, most of the time amnios go perfectly normal, but obviously there must be some women who lose their babies after having one. I would definately regroup, read up on downs (unless they are thinking some other genetic disorder like edwards disease) and read up on amnios...then either call your doctor back with your questions OR take them to your next visit. I this helps and I hope that you were just given a false positive. **HUGS!**

shihtzu51 · July 2011

The quad screen, integrated screen, sequential screen and FIRST screen are all just screening tests. Which means that a certain percentage of people will SCREEN positive. It doesn't mean that the babies have a problem, just that they are higher risk. So depending on the test and the lab, they pick up 3-5% of people as higher risk. None of it is meant to be diagnostic - that's what the amniocentesis or CVS is for. And ultrasound is less accurate than the screening tests - that's why they are available to begin with. If ultrasound was good, they wouldn't have made these tests.

Do you know what your risk is? Labs and docs use different cut offs for positive results - some 1:250, some 1:150. Even at a 1:2 risk, 50% of the babies are going to be normal. If your risk is 1:10, 90% of the babies are normal. If 1:100, 99% are normal...etc. So it's important for you to know what your levels actually were. Then you have to decide if it's high enough that an amniocentesis is worth the small risk of miscarriage.

ImAnRN · July 2011

shihtzu51:
The quad screen, integrated screen, sequential screen and FIRST screen are all just screening tests. Which means that a certain percentage of people will SCREEN positive. It doesn't mean that the babies have a problem, just that they are higher risk. So depending on the test and the lab, they pick up 3-5% of people as higher risk. None of it is meant to be diagnostic - that's what the amniocentesis or CVS is for. And ultrasound is less accurate than the screening tests - that's why they are available to begin with. If ultrasound was good, they wouldn't have made these tests.

Do you know what your risk is? Labs and docs use different cut offs for positive results - some 1:250, some 1:150. Even at a 1:2 risk, 50% of the babies are going to be normal. If your risk is 1:10, 90% of the babies are normal. If 1:100, 99% are normal...etc. So it's important for you to know what your levels actually were. Then you have to decide if it's high enough that an amniocentesis is worth the small risk of miscarriage.

well put!

Michele&Chris · July 2011

After the NT scan and quad screeing, we were given a 1:40 chance that our baby has Down Syndrome. We originally scheduled an amnio, but after researching and discussing the situation DH and I cancelled. The doctor asked if we would abort the pregnancy if the baby had Down Syndrome. We said "no" so he agreed that it's pointless to possibly endanger the baby with the amnio.

Two friends of mine have children with DS. One is 5 and the other is 23. They both (unknowingly) gave me the same advice. Neither had an amnio and both said the first year was no different than the first year of their non-DS children. They need to be fed, cleaned, rested & most of all loved. So there's plenty of time to adjust/research/etc. after the birth.

The best of luck to you and whatever decision you make is your own - please do not let doctors try and convince you otherwise. It's my understanding that they push for the testing to be done by 20 weeks in case the mother wants to terminate the pregnancy. That's their motivation for getting things done quickly.

Want a personalized experience?

Scared

Re: Scared

Choose Another Board

Search Boards