Monday, March 21, 2011

Another Thing To Worry About

I was going to write about the trans abdominal cerclage procedure and my experience, but I haven't been motivated to do it...yet. But I wanted to update you with what's going on. I went to the doctor last Tuesday and opted to do the First Screen test. It's done in the first trimester and it checks to see if you're at risk for carrying a baby with Down's Syndrome and Trisomy 18. I did it with both Sam and Jack and all was fine with them. So I elected to do it again this time.

There are a few different things they check for when they do this test. They do an ultrasound to check the thickness on the back of the neck (nuchal translucency), which can be an indicator of Down's. They also do a simple blood test (finger prick) and send it off, results are back in a week. They called me today to let me know that I am not at risk for carrying a baby with Down's Syndrome (Trisomy 21) but that I am at a slightly elevated risk for carrying a baby with Trisomy 18 (Edward's Syndrome).

I know that there is a 5% chance of the results being false positive, but there's also a 95% chance that I could be at risk of carrying a baby with Trisomy 18. The doctor told me not to worry "too much" because my risk of being a carrier is only slightly elevated, but how in the hell do I NOT worry? Of course I'm going to worry, it's in my nature. They base the results on the ultrasound, the blood results as well at my age at delivery. The nurse practitioner said that the normal range for someone my age (28) to have a baby with Trisomy-18 is 1 in 150, but that my risk was 1 in 137. That seems awfully high to me. I tried to call them back to verify those numbers but they had closed 3 minutes prior. This is not a diagnostic test, but purely a test to determine if you need further testing.

They said they'd refer me to a perinatologist and would call me back with an appointment date tomorrow. I admit, I googled and got sucked in, so I shut it all down and am trying not to worry about this. I don't feel like anything is wrong, but I know that doesn't mean much. I don't want to think about even losing another child. I do know that Trisomy 18 is a deadly disease though and that 50% of babies die within 2 months and 90% die within 12 months. I don't want this to be my story. That scares the shit out of me.

Again, I have to remind myself that just because I am at a slightly elevated risk of having a baby with T-18, doesn't mean that he or she has it. This it is not a death sentence. The baby could be totally fine and I'm worrying for nothing. I hope this is the case, but we'll have to wait and do further testing- another ultrasound, more blood tests and possibly a more invasive amnio. I'll know more tomorrow, hopefully, but I just wanted to get this off my chest. I'm hoping that by letting go of this worry and putting it out there, that it will help me deal with all this. And if you guys want to pray and cross your fingers, I'd appreciate that too.



Raising Snowpeas said...

Praying for you and your baby Monica. I can't imagine how hard this entire journey has been for you and now to have this... well, I have no words. I am a worrier by nature also and no matter what anyone ever said to me during my pregnancy, I couldn't help but worry. I hope you get some additional reassurance that things are okay soon! I'll be praying.

The Nanny said...

Crossing fingers and praying, absolutely. xoxo.

missing_one said...

Please just think positively . Those odds only seem very slightly elevated and they are still 'odds' remember?
I'm praying for you and baby. Just remember, it's completely out of your hands, you have no control, got to give it up and just hope.
*big hugs*
Love you guys!

meemawfish said...

I'm will definately pray for you and your sweet family.

Misc Momma said...

Those tests! So stressful. When I had it done, my U/S tech was not friendly and would not smile or anything, so I was SO paranoid. Of course they wouldn't tell me anything either. I hope you find some peace and don't let this weigh you down in such a happy time.

Cassie said...

Oh, Monica, what a worry! I'll be praying for your family. I hope you're able to get some reassurance soon.

Rachel said...

I know you are worried, I would be too. Try to avoid Dr. Google. All he does is scared moms to death. Give your doctor a call today and get in to learn more. I'll be praying its nothing.

If it helps any seeing the numbers in a different way, you have a 0.72% chance of a Trisomy 18 baby versus 0.67% for the general population. That is a very slightly elevated percent increase. Not even 1/2 a percent difference.

sapphireblue said...

That's the bad thing about those tests. They can get you worked up. I agree about DR. Google doesn't help either. You're in my thoughts.

Sophie said...

Prayers, positive thoughts and crossed fingers!

Monica, I'll be moving back to ATX in the first week of June. PLEASE, if you ever need anything don't hesitate to ask! Always thinking of you. ((hugs))

Marie W said...

Ugh. Can't anything ever just be easy ? :-(. Thats how I feel sometimes.
I'm not a big believer in "tests" and "probabilities", but I am a big believer in prayer. I will be keeping you all in prayer.

Anonymous said...

I am keeping you and your baby in my prayers. I know it is hard not to worry. It is part of being a mother. Please let us know once you hear something. (Hugs)
My 3 sons....

Travelwahine said...

Monica I will be praying for you and your baby. I know you will worry regardless of what anyone tells you but try to breathe, deep and take in the wonderful news of this pregnancy, savor this time, it goes by too quickly. Thinking of you and praying hard for a healthy baby. xoxo

Kristi said...

What an emotional roller coaster! Stay positive! I'll keep you & your precious baby in my thoughts. I'll be available tomorrow afternoon if you want to talk.

Jessica said...

Darling, I would be such a hypocrite if I told you not to worry but please remember it is 'elevated' and warrants a closer look.
If you want to talk you know how to reach me - day or night- I am only a call away.
I will be hoping and sending good intentions for you all.

Virginia said...

Oh, crap. I am banking on a false positive because something similar happened to my sister and her doctor scared the bejebus out of her and everything was 100% fine in the end.

Praying, thinking, hoping, crossing fingers.....and stay off the Google, ok?

Umair Aziz said...