Fan, Alumna, Patient

During my time as a Morgan, I have gotten to know East Carolina University in many different ways. First, it started off as a slow fade to becoming a fan.  :-)  NC State had my heart for a while, but when we got married I converted over to a full fledged ECU fan.  About two years after we got married, I decided to pursue my master's degree in Special Education and applied to be a graduate student through ECU.  In December 2012, I graduated with my master's degree in Special Education from ECU and became an alumna.  Then in November 2014, I also added patient to my list of affiliations. No longer am I able to go to New Bern to see my beloved midwife.  I am now considered high risk. No woman wants to hear those words when she is pregnant....especially not one who is below 35 like me.  Clearly, that entails that something is wrong.

On the morning of our appointment, I was a mess.  I was barely holding back tears, my stomach was upset, but I was trying to put on a strong front.  When we entered into the hospital and I got registered, a peace came over me.  I was still scared to death, but I knew that God was right there with me.  I knew that he had already planned my days and chosen our baby specifically for us.  I knew that no matter what the outcome was, that my God was faithful and his providence would be made known through our situation. The lyrics resounding in my head were, a peace that passes understanding is my song.  Which, by the way, is very ironic because Aaron Shust has a son with DS. 

So, on December 5 at 9:10, we walked through the doors of the East Carolina University Brody School of Medicine high risk clinic to go to genetic counseling and have a Level 2 ultrasound done.

In genetic counseling, Allison (our counselor's name) explained to us all about Down Syndrome.  She didn't tell me anything that I didn't already know, but she trudged forward for Jacob's benefit.  She then went in depth about our family histories asking questions about general conditions (HBP, high cholesterol, diabetes, heart conditions, etc.).  But, more importantly she spent time drawing out our family tree asking about genetic disorders (by the way, Trisomy 21 isn't necessarily thought to be passed down through generations--though it can be-- it can also just be an anomaly) and intellectual standing of each person.  While we did tell her that there were definitely some branches of the tree that weren't all there.....just kidding!!  Allison ended the appointment with, to me, the craziest/most disgusting thing a mother will ever hear.  We explained to her that we wanted to do the Harmony test, wait for the results, then decide about an amnio.  To which she explained that we were pushed a deadline (wait 10 days for blood results, get back in for anmio appointment, wait 10 more days for results) and that would bring us dangerously close to 24 weeks (the legal deadline for abortion), so that if we wanted to terminate the pregnancy we wouldn't be able to.  I quickly shut her off and explained to her that we have complete trust and faith in the Lord.  And that he has a plan for us, and that we would never get in the way of that plan or even consider an abortion.  She was very understanding, told us that she had to inform us of all options, and didn't mention it again. Altogether, the genetic counseling took approximately 30 minutes and I walked away with a few pictures that I took, well...just for kicks and giggles.

My blood results and risk percentages

Our family tree

Then, we went back out to the waiting room to wait for the Level 2 ultrasound.  Let me take a second to just say that we have amazing families. My mom and dad came as well as Jacob's mom to wait with us in the waiting room.  They knew there was a chance that waiting in the waiting room was all they would be doing, and they still came to support us.  It was definitely comforting knowing that they were behind just a few walls should we need them.  Back to the ultrasound-- While the Level 2 ultrasound is not conclusive, it was going to give us more information to work with.  It only differs from a regular ultrasound in the fact that it has to capability to do a nuchal translucency test.  The ultrasound lasted at least 45 minutes if not a little longer. Our ultrasound tech, Michelle, was amazing!  She took her time and explained to us exactly what she was looking at.  She looked at the following things specifically (and I may be leaving some out) and was looking for the followings things: the heart (4 ventricles with no holes), the paired organs (2 present), the intestines (blood flow was sufficient), big toes (in line with the other toes), pinky fingers (3 joints), femur bones (correct length), head circumference, nose bone (that it was present and positioned correctly), nuchal fold on the back of the neck (that the thickness was within normal limits), eyes/nose positioning (that the eyes were an appropriate distance from the nose), lips (looking for no indicators of cleft).  I think that is about it.  And the whole time, our baby girl was very cooperative.  I learned my lesson from the last ultrasound and did not drink OJ prior to coming.  Of course, I didn't eat or drink anything, because my stomach was in knots.....diarrhea with a tendency toward throwing up (probably TMI!). When the ultrasound tech started looking at our baby's heart, I asked her if there were 4 chambers there because somehow I had gotten confused in New Bern when they were only looking for 2.  At that time, she opened up and really started explaining to us what was going on.  Though she probably wasn't supposed to, she went through each of the above listed soft markers and explained to us exactly what she saw.  I was so thankful because it meant I didn't have to lay there in complete panic and worry throughout the entire ultrasound.  During the last 15 minutes, the ultrasound tech had Jacob go get our parents and they were able to come in for the last part of the ultrasound.  I think she knew she had an audience because she started showing off for all of the grands!  We got to see her moving her arms around, putting them on her head and cheeks, yawning, crossing her legs, and more.  It was the first time that I had actually thought an ultrasound was cute.  Up to that point, ultrasounds had only been scary.

At the end of the ultrasound, we saw the doctor and he again confirmed that there was no evidence of any soft markers for DS.  He also told us that the ultrasound wasn't fail proof because it was still only a screening tool.  In fact, 50% of the time a child has Down Syndrome, there are no soft markers present on an ultrasound.  Very comforting, right?! Then, of course, the doctor offered us diagnostic testing-- aka, an amniocentesis.  We decided to do one more screening before pursuing something invasive.

So, I headed off to the lab for more blood work.  Mandy, my midwife, had recommended that I get the Harmony Prenatal test done while there because 1) it is not invasive and carries no risk, 2) insurance covers it at the high risk clinic, and 3) it is much more reliable than the AFP test.

	False Positive Rate*	Detection Rate**
Harmony Prenatal Test	Less than 1 in 1,000	More than 99 in 100
Traditional Test	1 in 20	85 in 100

  The Harmony test screens for 4 different things as opposed to the less specific 4 the AFP test measures. It measure your AFP (alphafetoprotein), hCG, Inhibin A, and Estriol, then based on the levels of each determines your risk factor.  We are supposed to get those results in about 10 business days. From there, we will make a decision on whether or not to pursue an amniocentesis.

After my lab work, we headed back out to the lobby and were done!!  We decided to all go to lunch together at McAllister's Deli to celebrate the good report. Both Jacob and I got a bacon spud with a cup of chili and boy was it good!  I think it tasted even better because a little bit of stress had been lifted from our shoulders.