Saturday marked 20 weeks into our pregnancy. Two weeks ago, at our routine anatomy scan we learned more than what we had prepared ourselves for, and these two weeks have been filled with up’s and down’s. We want to share this information openly for many reasons- most importantly because at this very moment I need to let this out. I need to remember these moments- even the not-so-great ones, because this journey will impact the rest of our lives. We also want our family and friends to have as much information as we can give them, so that I don’t have to retell the information time after time. We are hoping that this space can be a place for hope, and love, and prayers. Because we need them all.
Today we are heading to our MFM specialist, because we have opted for non-invasive testing. The MaterniT21 test will use my blood to detect fetal chromosomal abnormalities, and we should know the results in about a week.
Lets rewind a bit.
At our regular ultrasound at 18 weeks, we were told that our baby was showing both soft and hard markers for chromosomal abnormalities. (“Markers” are physical deviations from a “normal” scan. One soft marker alone does not usually mean much- but where multiple are found concerns are raised.) Baby Maxey was thought t0 have a cleft lip, a small calcium spot on his heart, and a missing right hand. Yes, that’s a lot to absorb. Our doctor could not tell us much more than that, besides that these markers really did not look like Down Syndrome, but set us up with a maternal-fetal medicine specialist who would be able to do a more in-depth ultrasound and hopefully get a better idea as to what was going on. (Lets pause here for a second. When I say that these markers do not look like Down Syndrome, please understand that this was not “good news”. We would gladly take a baby with Down’s and not bat an eye. My heart was not sinking because of the news of the physical abnormalities, but instead the idea that this baby may carry something much, much worse. Something that could prevent me from carrying him to term, or take his life shortly after.)
We left that day feeling discouraged. Okay thats definately an understatement. I cried for two days. We recieved countless text messages, facebook messages and phone calls that gave us more hope than I can explain. They reminded us that our God is good.
That Friday morning we walked into the specialist office with knot-filled stomachs, and sat through a hour long ultrasound. After the ultrasound we were moved to a “consultation room” while the specialist reviewed our ultrasound. (This is a sterile room with fake flowers and tissue boxes within your reach regardless of where you are sitting. You quickly get the feeling that this is not a great room to be in. Sweaty palms, yes. )
We didn’t recieve much news, just confirmation that yes, things did not look good. A double cleft, missing hand, extra finger on the left hand, and now- ambiguous genitalia. (I still think baby is a boy, and the blood test will tell us gender so when we get results we will know for certain.) They could not get an image of exactly what they were looking for within the heart, so that will be the focus at our next ultrasound in a few weeks. The specialist agreed that this does not look like Down Syndrome, and that if it weren’t for the extra finger it would look much like Amniotic Band Syndrome. It also looks a lot like Trisomy 13.
Our options were the following: termination, amniocentesis and a non-invasive blood test. We quickly ruled out the first option, and decided to think on the other two for a few days. Amniocentesis involves a giant needle going into your belly, drawing fluid directly from your amniotic sac. (Feeling faint? Me too.) It carries small risks to the baby, but tests for a much more broad spectrum of abnormalities. Honestly, my needle fear wasn’t what shied me away from this option. (Pregnancy in crisis gives you a strange armor- I knew that if I needed to do this for the baby, I could.) We decided together that it was just more information than we need. The blood test is non-invasive and holds no threats to the baby. It will confirm gender, and test for the three most common abnormalities: Trisomy 21 (Down’s Syndrome), Trisomy 13, and Trisomy 18. Trisomy 13 & 18 are considered fatal.
We trust that this test will give us all of the information we need. This baby is very much alive- kicking and thriving in me, and as long as he is willing to fight, so are we.
I have never in my life asked for people’s prayers, because quite honestly I always looked at other people’s needs and decided that they were greater than mine. But this time I am asking, because it is not about me. It’s about Him.
So grateful for your love and support,
