A 4% Chance

So on December 1st we went to the Maternal Fetal Medicine office to visit with a Specialist. We had NO idea what to expect but I think we were both pretty calm! An ultrasound tech came in and tried to make us feel comfortable and looked around at our baby for quite awhile with the ultrasound equipment. Braxton was able to see and understand what was on the screen because of all the anatomy classes he's taken for his major; so he saw that the lateral ventricles were measuring in the normal range this time- yay! I figured it was smooth sailing from there and waited for the doctor after the ultrasound tech was done.

This next long part is what I posted in a group for Hydrocephalus on babycenter.com when I got home from the appointment- It pretty much explains everything that happened (I've shortened it cuz the original post was sooo long)...

"Hi y'all, I'm new to this group. Just joined a group for nuchal translusency last night but think this will be a good resource for me, too. Here comes a LONG post, and I'm sorry! I'm just feeling a little desperate right now!

Yesterday I went to a specialist about the mild ventriculomegaly. I was elated to find out that his lateral ventircle measurements had gone down a bit to less than 9.5mm. But then the doc pointed out that the Nuchal Fold on his neck looked big... even though it was measuring normal. She then proceeded to tell me that even though the ventricles and Nuchal Translucency measurements are both normal, because they were discovered so close together, that there's a 4% chance he'll have Down Syndrome. .......  uh.... what? She told me about testing (Amniocentesis and Chorionic Villus Sampling), and said we could do it right then- I said NO! She said she assumed we would not terminate, which of course is true. She said she was also concerned about the possibility od Down Syndrome since she didn't know what his heart was like (the sonographer couldn't get any good views because the little guy had his arm across his chest half the time and wouldn't turn around); 50% of babies with DS are born with heart problems that need surgery anywhere from birth to 1 year with more after that, so if she could see his heart was good it would be less of a worry. Then she asked my husband and I what questions we had and just stared at us. I couldn't even speak! I had no idea what questions I SHOULD be asking. All I knew is it felt like she'd just given my baby the kiss of death. I told her I couldn't think of anything, and she apologized that everything was just "so subjective" right now. We made a follow-up apt. for 3 weeks from now and left because we needed time to think and talk about testing and just process everything we'd heard.

Upon getting home, crying all night, and researching, I'm hoping there is nothing wrong. The fact that I'm only 25, don't even have an exact measurement for his Nuchal fold at this point because it was normal, and that his lateral ventricles are now better, gives me hope. My OB found nothing wrong with his heart last week so I'm hoping that it's still good a week later. Am I giving myself false hope? I don't even know if I should be more worried about his vents or the Down Syndrome now... maybe both?

I feel so frustrated that she would tell me I should test for Chromosomal diseases when things are still normal! Of course I'm still worried he's not ok, and obviously we'll love him no matter what... but I'm so confused with the negative information she gave me- not one bit of optimism. Any ideas on why she's so freaked out about the two issues? Thinking he could by hydrocephalic is enough, then she just added Downs right on top of that. Any advice would be most welcome! " 

Oh man, it was all rough. It was so much information all at once, a lot of which I didn't understand. Now that I've been through it all, I can explain that if the Nuchal Translucency (or thickness) measurement is bigger than it should be, it's a marker for Down Syndrome, as well as the Ventriculomegaly. There are other markers such as heart defects, no nasal bone (a physical characteristic of Down Syndrome is a flat nasal bridge), short limbs (femur and humerus bones are not as long as they should be), etc. It was all so much to take in.

Braxton and I didn't cry in the doctor's office, but when we each got in our cars and drove home, the water works began and didn't stop for days. We told my family that night when we got home and went and told Braxton's parents' right after. Their reactions were all so different! My mom's response, was classic Cheryl Boyle :) She said it would all be ok, we're supposed to learn from this, Heavenly Fathe ahs a plan, etc. Braxton's parents said they were SURE it wasn't Down Syndrome and that he would be totally fine, it would all go smoothly, etc. I think we needed both those different reactions :) 

I talked to my OB/GYN soon after. He is just the best :) He said he did't feel like I needed testing unless I wanted peace of mind, but that he felt peaceful about it all. Braxton and I went to the temple shortly after to find some comfort and pray about whether or not we should do any definitive testing. Testing was scary for me because the two most common are pretty invasive. There's also a pretty new blood test that is simple-you just draw mom's blood and they can see from the baby's blood that's present if there a high or low chance of DS- but expensive. The other two tests are invasive, and I was really worried that either of those would harm the baby, although it is rare. But that temple trip was the best temple experience we have ever had! I remember looking at Braxton as we sat in the Celestial room, telling him that I felt peace. I felt like everything would be ok and that I didn't want testing. Brax completely agreed. We walked out feeling good about everything :)