I've never really been able to read ultrasounds well. Just a bunch of black and white smears. But this black and white smear was our baby. It was little, but it was ours. We could actually see the heart beating in its tiny chest. I clutched Joe's hand and was so overwhelmed with joy at the sight and sound of its little heartbeat. I breathed a big sigh and let all my worries about this appointment go.
Because my regular doctor went on maternity leave (ironic, I know) - I was scheduled with a nurse practitioner for this visit. So I was surprised when after our ultrasound we were met by my regular doctor, back from maternity and dressed in workout clothes. She apologized for her outfit and explained that she had just stopped in for some paperwork but felt she should be the one to meet with us today. Looking back, I really should have been tipped off then that something wasn't right. But we had heard the heartbeat, so what else could there possibly be?
She went on to explain that in taking the routine measurements for our baby, the thickness of the back and neck were found to be outside the range of typical. This led them to conclude with confidence that the baby had what was called a cystic hygroma - a lymph-filled sac on the baby's back that wasn't draining properly. Cystic hygromas can be found in typically-developing babies, and would resolve on their own throughout the pregnancy. But they are significant because more often they are a red flag for several chromosomal abnormalities, the most common of which being Down Syndrome, Turner's Syndrome, and Noonan's Syndrome. Various others were also possibilities, but they were more rare and typically fatal.
Joe and I asked a hundred questions, each of which yearned to know just what our chances were. The doctor told us that in her 9 years of practice, she had only seen one fetal cystic hygroma, and the little boy turned out to have Noonan's Syndrome. With every question we asked, she seemed more certain that the outlook was not good. I could tell she did not want to be definitive, but I just knew she sincerely believed this was not likely to end with a typical, healthy baby. She recommended we see a perinatalogist in order to receive a more specialized ultrasound. Following his suggestion, we would undergo amniocentesis- genetic testing- for more information.
Joe and I sat in the car after our appointment and hugged and cried and cried and hugged. I felt so enveloped in grief and loss of what I had envisioned for our baby, for our family. I work with children with special needs every single day, including some with down syndrome and one little girl with turner's syndrome. But that almost made this even harder, because I knew exactly what challenges lay ahead.
I remember sitting in the car and saying over and over, "This just isn't fair. Its not fair. How could this happen to us, after all we've been through to have a baby? What are the chances of dealing with both infertility and a cystic hygroma? Its just not fair." And Joe, the strong one that he is and has always been, would say "Its going to be okay. It will all work out. I don't know how, but it will." And I said, "No, its not okay. Everything is not okay." But the more he repeated those words to me, the more I believed them.
Of course we went home and googled everything we could about cystic hygromas. Pictures of physical abnormalities burned into my mind. Hygromas occur in only 1% of pregnancies. Multiple places reported that 60% of those fetal cystic hygromas are the result of a chromosomal abnormality. So over the next month we clung to that 40%. Somehow having a number to cling to, as grim as it was, seemed easier than the complete uncertainty that we were facing.
The day before this appointment, we had discovered that my insurance did not cover maternity. Suffice it to say that through the work of some amazing people and more miracles, we were able to get it straightened out so that I was covered. But it did cause us to push back our appointment with the perinatalogist for about 3 weeks so that it would be covered.
That month of uncertainty brought us closer to each other and closer to our Savior than we have ever been. We cried often. We prayed even more often. Our family fasted for us. I remember feeling like I had a distinct choice to make. Like I was standing at a crossroads. I could succumb to the fear and the pain and let it completely overwhelm me. Give in to those negative, destructive thoughts. At times I felt that would be the easier way, because that's what I honestly felt like doing. Or I could turn everything over to the Savior and allow the atonement to heal me. I could choose to have faith in the midst of my fear and move forward with confidence, knowing that Heavenly Father did have a plan for me, and this was part of it.
"Two roads diverged in a wood and I--
I took the one less traveled by
And that has made all the difference."
There were days I spent on each road, but in the end Joe and I both came to a place where we could accept whatever Heavenly Father had in mind for us. I studied everything I could about miracles and prayed with all my heart for that to happen. But I knew that whatever did happen at that appointment would be the will of the Lord, and truly understanding that is the only way we could move forward into the unknown.
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