My husband and I are headed to my first visit with the local maternal fetal medicine group that I am being referred to. We are grateful that a friend is watching our children so that we can go alone to this appointment and hear the verdict with less distractions. We sat in the waiting room for what felt like an eternity, and then finally they called me back. The ultrasound was long, and the sonographer didn’t say much (as expected), but pointed out little body parts she was seeing. One praise report was when she looked at the umbilical cord, she confirmed with us that the cord actually DID have two arteries as it should! She showed us where the two arteries split and diverged around the bladder. I exclaimed out loud, “That’s my prayer!” Now you can look at this discrepancy with my OB’s results one of two ways. One person might say that the sonographer at my OB was simply wrong and missed it. But we look at it differently. We had been praying the night before over the two issues we were told about – the brain lesions and the single umbilical artery. When you have faith in God, you believe that He can do ALL things and still works miracles today. We asked God to heal the baby’s brain and also to create a second umbilical artery. So we are believing that God answered one of our prayers by creating a second umbilical artery overnight. [Apparently the sonographer at my OB’s office is extremely talented, often finding things that maternal fetal medicine groups miss. I believe she did in fact only see one artery because only one artery was there… at the time.] 🙂
The doctor finally came in to share her impressions of the ultrasound, while initiating another ultrasound at that moment to actually show me live what her concerns were. She had a very somber tone in her discussion with us while moving the wand around my belly. She pointed our that our baby had a lot of “complex issues” going on. She confirmed the brain lesions, commenting that they were large. She then went on to list what seemed like many other issues that my OB never mentioned to me (likely on purpose in order to let the maternal fetal group break the news). The baby had what she called a “complex heart defect”. She said she was seeing posturing or defects possibly in the legs and hands. She also confirmed the baby was small in size for gestational age. She then confirmed that all of these markers put together lead her to believe our baby might have… Trisomy 18 – just as I had suspected. She started sharing some of the stats about these babies. They often look different and have many defects in various organs. Many die in the womb. Those that do go full term and are born alive, typically live only hours or days. Thankfully I had already briefed myself on these stats, because the dismal nature of them can make any parent crumble. She went on to start a discussion about the option of terminating the pregnancy which I quickly shut down. We agreed that it was best that I transfer care to their group in light of these results so that the baby and I could have the higher level of care that we need. She also recommended we see a cardiologist to have a fetal echo done in order to further diagnose the heart defects.
Before leaving, we met with a genetic counselor who was very sweet and kind. She was comforting in her words and assured us that they would be here to support us the entire way, and that there were multiple programs designed for parents of unborn babies with terminal diagnoses. These programs prepare parents for everything from deciding how much intervention you want at birth to preparing for death and burial. It’s a lot to wrap your mind around in a couple days. She offered an amniocentesis which we refused. And she also offered a blood test which was about 90% accurate in confirming Trisomy 13, 18 & 21. We agreed to take the simple blood test.
The drive home was a sad one. I realized after pulling out that I should have let my husband drive since it’s difficult to navigate through tears. But we knew that now we needed to elicit all the prayers we could get while waiting on these blood work results. I could tell these results really took away a lot of my husband’s hope. In the meantime, I spent the night on the web reading some excerpts from the blog of the woman referred to me by the genetic counselor, and also watching other Trisomy 18 legacy videos on YouTube. While they were heartwrenching to watch, they actually comforted me and gave me the hope I needed. Many of these babies ARE born alive – and can live days, weeks, months, and even years. So that is what my prayer was going to be: to see my baby born alive, even if it was just for one breath.
Fear not, for I am with you;
Isaiah 41:10
Be not dismayed, for I am your God.
I will strengthen you,
Yes, I will help you,
I will uphold you with My righteous right hand.
Fearfully and Wonderfully ZION 