The Journey Begins

October 18, 2016

            “The doctor will be back to talk to you about the scan. I just want her to check something out on the baby’s face. It won’t be too long.”

            When the door snapped behind the ultrasound tech, I looked at Cory to see if he had any thoughts about what it could be. Everything seemed just fine to me when I looked at the beautiful little hands and feet and head in the ultrasound screen. I rubbed my belly as our baby – which we had just found out was a boy – kicked or head-butted or flailed.

            “Let’s just hear what the doctor says,” Cory said. His voice was tenser than when he said, “I guess we don’t need to keep thinking about girl names,” after the tech pointed out the penis and scrotum very clearly between our baby’s two legs a half hour before.

            I knew the 20-week anatomy scan was an important one. I’ve had friends who received scary news about their babies (now beautiful and growing outside their bellies) at this point. I knew it was possible, but I hoped to get out of this bad-news-free.

My heart raced as I thought through the ultrasound in my head. The tech had chatted jovially and pointed out the ten fingers and ten toes and the developing bones and the growing organs. By the end, we were just excited knowing that we could form more of an identity for our baby. It had been such an abstract experience up until this point. Although we had seen him on an ultrasound screen before, it wasn’t until recently that he started kicking. Now we had a gender and with it, the boy name we had already discussed. Over the course of that hour-long appointment, our little boy had become more fully formed in our heads.

I didn’t even notice that the tech had seen something “off” when she looked at his face. As I commented on his little nose and his mouth that I could see in the screen, she was seeing something deeper. It was the last image before she was done scanning his small cantaloupe-sized body.

 Now we were waiting to learn what was wrong.

            “We think he has a cleft lip,” the doctor told us softly when she came in a few minutes after the tech left us in suspense. Pregnant herself, she waited no time to tell us knowing that we were racking our brain. I wasn’t yet sure of what to make of this news…only thinking “my perfect baby.”

            “The chances are high that it’s an isolated cleft,” she goes on to ease us before she describes how a cleft lip or palate could be related to other chromosomal abnormalities. But because the rest of the scan showed normal growth, especially of the brain and heart, and it’s on the left side instead of the middle, the chances of other simultaneous issues goes from 10-15% to 8-10%. 

            To make sure that the images the tech showed her were accurate, she scanned our little boy’s face and pointed out the dark line that went from lip to nostril. It was a complete cleft as she can tell.

            I didn’t even know this was something they scanned for. I didn’t know anyone with a child in the U.S. who had a cleft lip or palate. I had only seen the photos of children from third-world countries on the Operation Smile brochures that I had come across at some point in the last decade. How can this affect my baby? What does it mean?

            After the doctor went through the scans to confirm that, indeed, the brain and heart looked completely normal at this point in development, she noted what would come next. We would be referred to fetal therapy, which would prep us for the surgeries our baby would encounter three to four months after being born. Depending on the severity of the cleft (which they won’t know for sure until he’s born), he’d have at least two surgeries.

            I was numb at this point picturing his bisected lip and wondering immediately if I’d be able to breastfeed.

            Then, the doctor offered an amniocentesis. Because of the higher risk that there could be other issues, this would be an option to find out more information. After talking with the genetic counselor who, weeks ago, had told us that the chromosomal blood tests had come back as low-risk for the three chromosomes they had tested, came in and guided us through the next steps. In the end, we decided to think the tests through.

            Maybe we spoke on our way back to the car, or maybe we walked in silence. I don’t remember much. I started thinking through what this news meant for us moving forward. I didn’t know who to even go to or who to tell. I felt embarrassed for my little guy and I felt I had just lost something. I don’t know what. I lost something I suppose I expected from motherhood.

            It wasn’t until we were almost home that I started crying. I was reading through the pamphlet our genetic counselor gave us. The causes, it noted, included low folic acid. “It could be my fault,” I thought as tears streamed down my face.

            “Don’t read that if it makes you cry,” Cory said looking over at me sadly. He and I handle hard news differently. This would certainly be a test of our marriage. Would he be there for me the way I needed and vice versa?

            While I need to talk through my thoughts and cry it out and work my way through emotions, Cory reserves his emotions for the choicest moments. In some way it eased me to see him, the medical person, less affected by the news.

            We spent the rest of the evening talking through our choices. I would go in for a fetal echo the next week to get a closer look at the heart. But what about the amnio? It was up to me, Cory said.

            We spent the rest of the evening telling family.

            “Well, it’s a boy,” I said to my parents quickly. But after my mom’s screams of delight started to die down, I said, “but we got some not-so-great news, too.”

            While understanding about our predicament, my parents sounded non-plussed. “Well they can fix that, right?” I wondered if they were so far removed from those scary few months of pregnancy that they could only envision what came right after our little boy was born. We still had so many things to think about before then. We had so much to think about and to worry about in just the next few days.

            My sisters definitely didn’t see the big deal. But then when I texted the news to a friend who’s pregnant with her second child, I knew she knew at least a little bit about what was going through my mind. She knew of a friend of a friend who had a baby with a cleft lip and palate, and do I want to be in touch.

            “Yes! Definitely!” I texted back. The one thing that lingered in my mind was that I didn’t know anyone who had been through this. At least I had a resource that could truly understand what we were going through. It was the beginning of getting some more personal insight into what it would be like to be a parent of a child born with cleft.

            It was the beginning of a journey we didn’t ask to be a part of, but we knew we had to figure out how to navigate. How do we lean on each other? Who do we reach out to? How do we communicate this to our friends and family so they can understand what we’re going through? It was a journey we were on together nonetheless. And now we had a baby boy that was less abstract to us than before. A little guy who we already loved beyond anything we ever thought. That, I suppose, is how a journey begins.