The Un-Published Post

I have a confession to make. There is one post I've made on this blog since its inception that I did not publish for the public view. The topic of the post was heavy on my mind throughout the last 24 weeks of my pregnancy, but I wasn't quite ready to share the information because I wasn't sure of the outcome and also didn't want people to worry or speculate on our behalf (especially since I was doing enough worrying on my own). But, given how healthy and happy Layne is (knock on wood), I thought I would share the post now and let it be an experience that others can learn from and maybe find comfort in if they find themselves in the same situation.

So, here it is...

A Slight Sigh of Relief (written on Tuesday, 11/8/12)

After a scary weekend, on Tuesday we were able to breathe a sigh of relief.

On Friday morning I missed a call from my doctor’s office. My heart sank into my stomach as I listened to the voicemail from the doctor himself asking me to call him back to discuss my AFP Tetra lab results from this week. The AFP Tetra blood test was done to measure the baby’s risk for having a chromosomal abnormality, including downs, spina bifida, and trisomy 18. Everyone knows that when you get a personal call from the doctor, it is never good news.

After a painstaking 10 minutes (which felt like 4 hours), I finally got a hold of the doctor, and he delivered the news that our little munchkin tested at a high risk level for downs syndrome. He highly recommended that I come in for additional testing with a genetic counselor and high-risk doctor.

I couldn’t breathe as I listened to him tell me that the hormone levels were “abnormal”, which put the baby at a 1/206 risk for downs. They consider anyone "high risk" who tests over 1/250, and someone at my age is typically in the 1/900+ risk group. However, a 1/206 risk still means that there is a 99.5% chance that the baby is perfectly normal, and there are a few additional caveats:  about 90% of women who come back with abnormal results of any level go on to have perfectly healthy babies. Also, the test is completely wrong ~7% of the time, and it only catches 75%- 80% of downs syndrome cases. So, I began to wonder, if my test came back “normal”, wouldn’t I still have to live with the 25% chance that they didn’t catch something?

As you can imagine, I spent the next three days as a complete nervous wreck, unable to think about much else. We would love our baby regardless, but to think about the possibility of them having to endure a life full of such challenges was heartbreaking. I did, surprisingly, find great comfort on the internet, as I read multiple stories from women who’s test results came back much worse than mine and their babies ended up not having downs. The test also received a lot of criticism from people who actually found the test "morally wrong" as it is so often incorrect and causes so much unnecessary worry. Jared was also a big comfort, as he remained convinced that our baby was in the 99.5% group.

So, on Tuesday at 8am (the earliest they could get us in), we headed to the high-risk center. The genetic counselor shared my specific test results, and I found out that my abnormal result was driven by high HcG levels (3.4) and low uE3 levels (.49). A “1” in either of those measurements puts you in the “normal” range. She took a long assessment of our health & family history, and couldn’t find any other factors that would put us at a higher risk.

The next step was a level II ultrasound (which we were originally supposed to get the week of Thanksgiving), to look for any soft or structural markers for downs syndrome. They explained that they are able to catch about 50% of cases of downs via ultrasound, but that not all babies with DS have physical markers in the womb. We spent 30 minutes with the ultrasound tech looking closely at the heart, brain, chord, and skeleton, and as soon as I saw that little angel’s face I knew in my heart that everything was going to be OK. Jared and I “oohed” and “aahed” at the cute little face, and Jared proudly beamed, “HE has my perfect side profile!” Haha…that man is so humble. We also were in awe to see how much s/he moved, and laughed as we watched baby kick both legs as hard as s/he could as to say, “Get me out of here!”

After 30 minutes of bliss, they were able to confirm – our baby had no physical markers for downs! That reduced our risk to 1/400 (which only gives us a .025% chance for downs), which officially takes us out of the “high risk” category. They did offer us an amniocentesis, if we did want to know “for sure”, but with a 1/370 chance for miscarriage with that procedure, there was no way we were putting the baby at that risk.  While it will be hard going through the rest of this pregnancy not knowing "for sure" the fate of our baby, it wouldn't change the outcome, and I know that s/he is a gift from God and we will love him/her unconditionally no matter what.

P.S. To all of you wondering…we did not find out the sex (yet!). The ultrasound tech had us look away before she looked “down there”, but she was able to snap a photo confirming the gender and put it in a sealed envelope for us to look at, if we choose, at a later time. We haven’t decided when/if we want to look, but for now, it is too much fun to keep guessing J