Really Starting to Freak Out!

I know it doesn't help much - but the false positives are ridiculous! I had a false positive, and he is 9 and very normal and healthy. I bet you get a bunch of ppl responding with their own stories.

I can tell you that my downs level was off the charts and they sent me for further sono's which all came back normal. The waiting is tormenting :(
We were given the option for amnio but we declined for other medical reasons that test is too risky for me and my child. Hubby and I discussed it and decided that no matter what any of the tests indicated it would not change our decision to accept whatever blessing God bestowed on us. Just having that discussion and making that decision in itself gave me a form of peace. At that point it is out of our hands so why stress over it. I know that it is near impossible not to stress when it comes to the health and well being of your baby but the stress you are putting yourself under IS effecting your child. By not eating or sleeping and stressing out over this you are putting that baby at risk. Dehydration causes early labor. Proper nutrition and risk are critical for your baby's health. The offices are closed, there is nothing you can do to change that fact. What you can do is fix yourself a healthy meal, take a nice hot shower and tuck yourself in for a much needed nap. Even if you can't sleep just veg out and watch mind numbing TV for a while. Also keep in mind what my doctors told me....those test are notorious for false positives...do not worry until we tell you there is something to worry about. Good Luck and God Bless.

~BIG HUG~ Deep breathes..... Im sorry you are going through this. The waiting is the hardest part. I would start reading up on Spina-Bifida. Knowledge is power. That way if your sweet baby does have it you are prepared and you will know what the process is, how accurate their test results are and etc. Keep us posted.....~BIG BIG HUG~ God doesnt give us anything we cant handle and He knows what we can handle and what we cant.

Hi L.-

First, please take a deep breath and maybe even go take a bubble bath! You need to relax a bit...

My husband's family has Down's so we have been down this road with each of our pregnancies. I am waiting for number 3 to show up any day now. Sometimes these screenings create more scare factor than really warranted and a random comment from a general OB/GYN can do that since they are not the expert on genetics or being able to frame the conversation correctly.

You need to know that the test is a SCREENING. This means that they use the results to come up with a probability number of having a child with one of the genetic defects it screens for. These numbers are then adjusted based on additional information gathered through things like the US and the genetic counseling.

The US is pretty painless (although depending on baby's position it may require an internal as well as an external and takes a good two to three hours) and they are taking measurements at about 20 weeks to see that things are developing "correctly" and are within "normal" parameters.

The genetic counselor will ask about family history going back as far as you have knowledge. The more you know the better. Things that they are interested in are birth dates, death dates (or at least approximate ages), cause of death, any illnesses including high BP/heart problems/diabetes/etc., disabilities, and what-not.

All this information is then rolled together again and a new probability number produced.

Ultimately though, the only way to obtain a complete and fully accurate genetic count of your baby is to proceed with an invasive procedure like an amnio or CVS.

Now, this is the technical process behind what you are going through. As for the emotional, here are a few things you need to consider:

1) If your probability remains high, are you going to go for the more invasive procedure(s) and are the risks associated with a possible auto-abortion acceptable to you?

2) What are you going to do with this information about the condition of your child? Will you terminate? Or is this information going to be helpful in preparing for your baby's birth and arranging long-term care for a special needs child?

Once you know the answers to the emotional side of this, then you can calm down more. In all likelyhood, Baby is just fine, but you need to know what you would do and how you would handle a less than "ideal" situation.

I wish you luck and blessings and if you want to message me, feel free to do so.
~C.

Not eating and not sleeping are only going to make things worse. You have to take care of yourself and your little one. The more exhausted and hungry you are the more emotional you will be.

Many, many times the tests come back elevated. Some of them are very sensitive and the results that come back depends on when the test is given! Happened to more than one person I know.

What will change between now and when you make the appointment? Nothing. You need to continue to plan and prepare and care for your baby. Of course you are going to be concerned but keeping yourself upset and overcome with worry won't help.

Because I was over 35 with our last we met with a genetic counselor and had a level 2 us. Of course there is worry but they are amazing at explaining everything and setting your mind at ease.

And how do you keep it together? You are a mom. That's what mom's do. We keep it together for ourselves and for our kids. Mom is the heart, the core and the strength of the family. This is your first test as the mom and you can do this. hugs to you and baby!

First of all relax. Take care of yourself and your baby.
Years ago I knew a man who had spinal bifida and was in a wheelchair. He had a college degree and lead a very normal life. He was really a great guy. I moved to a different state and lost touch with him but tried to find him on both fb and myspace, he's not on either one.
If your baby has spinal bifida there is nothing you can do but take care of the baby and right now that means getting the rest you need and eat healthy meals. It will all work out in the end and worrying about it will not help.

Oh my goodness, how nerve wrecking that is. Been there! I cannot tell you not to worry, because there is just something about the WAIT and suspense that makes you worry.

What I can tell you though that worked for me is lots of prayer and faith. Get around some positive people so they can encourage you of the possibilites. I also know that after I got back the results, it was all FALSE. Then that made me mad because they have me worked up for nothing.

If you have no genetic history of down syndrome or anything to that effect in your family, I would try not to worry about it. Also, whatever is to be will be. If the baby has spina and it is God's will that it lives, you will be the perfect parent to nurture that child and you will have the strength you need to take care of it.

I do wish though that you get back negative results. In the meantime, read up on both what to expect IF the results should go either way and to see how others with that condition dealt with it, organizations, etc. Sometimes the facts have a way of easing our fears. All the best!

Snow days are about sleeping in. Eating late breakfasts in the pjs, etc. So go do that.

Yes the test results are stressful. The waiting is stressful. The snow is stressful. However, you are still a mom-to-be with a beatiful baby needing you to eat and be stress free.

These tests are done so that if there are certain conditions they can be recognized and dealt with. While knowledge is power and preparing, it can also be a downfall. Since the doctor's don't want to be sued for not being able to tell patients things before hand, the tests are extra sensitive. They'd rather prepare you and be wrong that not prepare and be sued.

25y ago when my mom was pregnant with my sis, she was 37. she had 4 friends that were all pregnant at the same time. She is the only one that didn't get the amnio tests done. To her they didn't matter. She was having the baby anyway, why stress over something that you'd have no control over, and would have to wait 4m to see if it was right? Her 4 friends all had the tests done. 3 of them came back with positive results. One had her dr. tell her that her child was down-syndrome and she should consider terminating. Her hubby said they should follow the drs suggestion. She was pro-life. It ruined her pregnancy and almost her marriage. She said no. She had her baby. Of the 3 babies with positive tests, only one was born with slight cerebral palsy. The 'will be downs' baby was born perfectly healthy!

Be strong momma.
M.

L., just want to tell you my story. Four years ago my back went out on me and my doctor sent me for a CT scan of my back to make sure I hadn't hurt a disc. This was overseas, and I brought the digital scan home to the US. I took it to a ortho-specialist (the doctor overseas was a general practicioner) and when he looked at it, he asked me if I knew about my spina bifida. I asked him what on earth he was talking about, and he showed me my scan and pointed out that I had spina bifida. I was 47 years old.

So your baby COULD have it, but like me, a mild case of it that never even presents itself except on a scan.

Btw, my back issue was muscular - a good massage therapist and ibruprophen/muscle relaxers fixed me up.

All my best,
Dawn

It sounds like you were a victim of the storm! I'm sure they will get to you as soon as their offices open, etc. but I would go ahead and place a call to your OB and leave a message if they are still closed. They may be checking messages and doing what they can do from home, so start there. Secondly, as others said...make sure you are eating and drinking! You have to take care of that baby and yourself, so make sure you're eating something!

I also am a supporter in the "knowledge is power" theory. Do a little bit of reading, but try and stop yourself, don't overwhelm your brain with crazy amounts of info. Secondly, I would research the amnio. IF they decide they want to do one you need to be ready with your thoughts and questions. Amnios are quite safe anymore and although there can be extraneous circumstances for some, for most it is a valued procedure. EVEN if termination is not an option for you, I think an amnio would still be well worth it to find out some answers.

Remember that it's horrible now to be told to hurry up and wait, but even after you have the level 2 there might possibly be unanswered questions still, so take deep breaths and try and get yourself to a calm place! Hang in there!!

That test is so unreliable! I know so many people who were called back for further testing and they ALL had perfectly healthy babies. I elected not to have that test for that very reason.
I did have a level 2 ultrasound though. As a result of that test I was told by a perinatologist that my 3rd child most likely had Downs. She had only seen one other child that had my daughter "feature" and that was a severely effected, low functioning downs child. I too thought I would go crazy. I had an amnio, they did the FISH test and we found out she did not have downs. She is perfectly healthy.
As a result of a level 2 ultrasound with my second child, the Doc identified two problems with my son's heart. After having a echo done in utero we found out his heart was perfect too!
I will keep you and your baby in my prayers!

EDIT- Do not read about Spina Bifida! You do not know your baby has this. Also, I found out my 2nd child had a severe brain abnormality. I was so scared and upset for the remaining months of my pregnancy. Well once my son was born I can not tell you the peace (although their was heartache too) that came over me. When he was born and I was holding him he was just perfect to me. I beat myself up for a while because I didn't just enjoy my pregnancy. Things do have a way of working out and you and your baby will be OK even if it is not the outcome that you wanted or expected. God Bless!!