D and I were pregnant with our first kid, a kid we made on purpose. The entire pregnancy had been progressing totally normally. We went into our 20-week appointment super excited. D would love the baby, whatever its gender, but I was 90% sure I could only love a girl. The technician conducting the ultrasound stoically told us that the baby was, in fact, a girl. But then immediately followed up with…and she has a cleft. I didn’t think much of it, one of our friends was born with a cleft lip, it gets corrected and life goes on. The tech said she had to go get the doctor. I was laying there on my back with no pants on, in the dark, making silly comments to D, trying to make out a cleft or her little lady parts on the sonogram monitor. Trying to keep it normal.
The doctor came in, reached out to shake my hand like normal, and said in his slightly nasal, southern drawl, “Let’s see what’s going on here.” But he was quieter than he usually was and as he moved the wand over my stomach, he began to tell us what he was seeing in a voice that was sort of suspiciously soothing, a little too gentle. I started to shake and nervous laugh inappropriately. He told us that we were not looking at a cleft lip. She had a cleft from her mouth to her eye, on the left side. It was very deep. When he pointed it out, even I could see where bone and tissue were missing in her face. The entire left side of her face looked to be slashed, caved in, missing. I started to cry. I didn’t even know why I was so upset. That she wasn’t perfect? That her face wouldn’t be symmetrical? Then, as the tech turned on the lights, my heart dropped. The doctor told us that because of the cleft, she would probably lose her left eye. He made it very clear that there could be other complications, but that he couldn’t tell us the extent of the damage.
He made an appointment for us to meet with the genetic counselor that afternoon and for an amniocentesis and genetic testing. We had to rule out the things we could. We didn’t have much time. Texas, in 2013, banned abortions after 24 weeks. The state now bans abortions after 20 weeks. Suddenly this day had gone from “woohoo, quick gender reveal and back to work” to emergency appointments and facing a potential termination decision. I don’t think that at the time, I realized that was what all the hurry was for. I couldn’t even contemplate that I might have to give her up. But everyone clearly felt so, so bad for us. Every single nurse, doctor, and counselor asked us, “Is this your first pregnancy?” And when we answered in the affirmative, they just went, “ohhh, I’m sooo soooorry.” There was a flurry of activity around us, talking to each other about us, making appointments, calling Houston.
Because that’s where the fancy doctors are. In Houston, the ones who work in the weird stuff. Fetal diagnosticians. I didn’t even know that was a thing. My OB was straight with me and told me that she didn’t have much she could help me with in that instant, but she BEGGED me to stay off the internet.
We had an appointment with one of the county’s premiere fetal diagnosticians in one week. We spent the week leading up that appointment thinking….well, not thinking much really. I was dutifully keeping off the internet, we didn’t have any information. She had a cleft. She’d probably lose an eye. We didn’t even really know what else there was to be worried about.
As the night before the appointment progressed, it got more and more real. Even though we still didn’t even know what “it” was, we knew we were in Houston because it was serious and scary. There were a few times where D or I would grab the other’s hand, momentarily overcome with anxiety, and the other one would simply say, “I know. “
The morning of the appointment we drove into Houston, taking 59. Which was a fucking mistake. I hated that I couldn’t control Houston traffic. I could not stop watching the minutes tick away on the clock. I didn’t even really know where the hell I was. If this had been in Austin, I would have been able to plan for traffic, and how long it would take to park, how long it would take to physically find our way to the office once we were in the hospital, how long it would take to fill out paper work. Well, I had no control over this. We were going to be late. I started to get frantic. I was furious with D. I felt like he should have, I don’t know, read my mind about my need to be exactly 7-10 minutes early for an appointment and obsessively planned our trip into the city accordingly. I was so panicked, I started crying. I was sort of aware of how silly I was being, but I couldn’t stop wondering if being 5 minutes late meant that they would cancel the appointment and think I am an unfit mother and an idiot and everything will be awful and the world will end.
Turns out, no one cared, it was fine.
We were in Houston to meet with the fancy doctor and so that I could undergo an extensive 3D ultrasound (supposedly the Fetal Center at Texas Childrens has THE 3D ultrasound machine) and a fetal MRI. D and I are so lucky that our parents love us and are mostly retired because both of his parents and my dad came with us. I was both glad to have the company and yet completely repelled by having to be around other humans.
The sonogram began and they eased us in by checking all the other vital systems, heart, good, lungs, fine, kidneys, there. When they got to the brain, they paused, it was …ok. The cleft was deep. Real deep. Possibly hitting spinal cord deep. What the hell. Did not know that was a thing to be worried about. I don’t think I was crying yet. Mostly because in the midst of all this drama, they caught the baby on camera standing straight up on my bladder. Totally stretched out. I thought, that baby is so hilarious and rude.
Afterwards, the fetal diagnostician took us back into a little conference room to talk to us. He didn’t have any real information. Just that the cleft could mess up her breathing. Her swallowing, her tongue might not work. He couldn’t say for certain there wouldn’t be developmental delays or how deformed she would look once she was more developed. I started crying uncontrollably, just snotty and disgusting and sad and terrified. Now I knew what to be scared of and it was bad. It wasn’t just cosmetic; she could maybe not breathe or eat. We went out and saw our parents and my mother in law ran to me and kissed my cheek and looked into my eyes. I just shook my head and she put her arm around my shoulders and I grabbed her hand and cried into it while people talked all around us and we wandered the hospital to where the MRI was located.
After the MRI, we all traipsed back across the hospital to meet with the fetal diagnostician again. He told us that the cleft was not touching her spinal cord. Whew? He told us that he wished he could tell us more, but we had a decision to make. Maybe we were a young couple and this was too much for us, we could try again. We were at 21 weeks, 3 weeks to decide. He told us that the pediatric craniofacial surgeon on staff might be able to give us more answers, and an appointment was set up for the following week.
We walked out of that meeting and saw our parents waiting for us, expectant and loving and I just couldn’t. My dad hugged me and I stood there completely stiff. I wanted to be away. I didn’t want to talk. I didn’t want sympathy. I just wanted to escape. D briefly explained what we learned, or really, what we didn’t learn, and somehow convinced them to leave. We slowly made our way to the parking garage. We were both crying. I was crying so much I couldn’t see. My head hurt. I couldn’t think.
Not only didn’t I know what to do, I was despairing because I knew that no one else did either. No one could tell us what to do. We’re prochoice, which is a viewpoint that does not actually offer any guidance in making a decision. Even our family who might have differing views on the subject loved us too much to try to influence our decision. I cried on the phone with my sister. I cried on the phone with my best friend. I cried while I wrote out group emails updating my friends. I cried in the offices of my work friends. Because during that week between appointments, D and I went to work every day. I could feel her kicking every day. We kept moving along with life, even though we didn’t know if we would get to keep her.
D and I would meet for lunch and just sit in silence, on and off crying. There was nothing to talk out. We were either going to have an abortion or not. What could we handle? What was fair to make her handle? Those were the issues. And no amount of talking would lead to a neat, adequate solution. What really wrecked us both was questioning the morality of bringing a baby into the world who would suffer, who wouldn’t lead a real life. But then I would torture myself with endless roundabout thinking, who am I to decide what’s suffering, what’s a real life. What if she could breathe unassisted but couldn’t swallow? What if she could eat normally, but was horribly disfigured? What if she was only somewhat disfigured but could only breathe through a trach? What about all the other possible delays and problems?
I knew that I loved her. We had already named her. For us, regardless of a termination decision, she was a person. But, we were her parents. We had to make this decision for her. The ultimate decision: life or not life.
Our friends sent us the most thoughtful and comforting notes and made us food. People told me of their sisters, their cousins, their moms who faced similar situations. I felt loved, I really did, but I also felt alone. People go through similar things, but not this exact thing, and no one, no one, would tell me what to do.
Before the appointment with the surgeon, D and I met with a therapist who labeled what we were going through a trauma. I was so grateful to hear that. Maybe it’s my own longstanding self-doubt issues, but somewhere in my mind I had thought maybe I was wrong about this, that there was a clear decision, that I was all worked up over nothing much. But no, we were in the midst of a real trauma and it was horrible.
We met with the craniofacial surgeon and he told us that in his experience, kids with facial clefts were usually fine. There was no reason to think she would have breathing or swallowing issues. She might be a little delayed, but that would probably be because of frequent hospital stays and vision loss. I wasn’t relieved exactly, but I was calmer at this appointment than the last. The reason why I wasn’t relieved was because he told us that her life would still be difficult with countless surgeries and therapies and a very real disfigurement. All the best plastic surgery in the world and people would still be able to look at her and know she wasn’t normal.
He then showed us some pictures of kids with facial clefts like our baby had. Because I had kept off the internet, I am very good at following directions, I had never seen such faces. I was shocked. The open faces, the drooping eyes, the scars, the prosthetics. I audibly gasped and I started to cry all over again
We left his office and sat in the hospitals’ shitty little cafe over a couple of cokes. We were so confused. The worst, the things that would prevent a real life were off the table. But we were still facing a lifetime of physical and emotional difficulty and the doctor was making it pretty clear that a lot of people at this point terminated and that no one could blame them. When I say confused, I mean that my thoughts weren’t processing clearly or fully. My brain couldn’t connect things. I’d lose a thought before I finished it. We were a little over 22 weeks, less than two weeks to decide.
We didn’t know what else to do, so we got in the car to drive back to Austin. As we turned left to enter the entrance ramp onto the highway, I lurched forward and couldn’t breathe. I screamed as loud as I have ever screamed in my life. For a moment, I had no control over my mind or heart. D was worried and wanted to pull over, but when I could breathe again, I told him no, I’d be ok, let’s just go home.
And somewhere along 290, I remember, it was gray and foggy outside, we’d just passed a Buc-ees, and all of a sudden, I just knew. I knew we would have her. I knew we would love her and take care of her. I had good insurance and we have a fantastic family, we would be ok, we would do this. I have never in my life experienced a moment of clarity like that. I was hesitant to tell D because he was clearly not so sure. I didn’t want to pressure him, I wanted us to naturally come to the same point. And so I gingerly probed him with a few questions to gage where he was at. He was getting there. Over the course of the night and next few days, we kept talking and then he knew too. We then quickly snapped into action, meeting with the NICU doctors, quizzing potential pediatricians, choosing a craniofacial surgeon. Turns out, Austin has some good doctors too.
When she was born I was concerned that they were going to take her right to the NICU and I wasn’t sure if I’d be able to see her, so as soon as she arrived, and there were at least 10 doctors and nurses buzzing around the room, I asked D, “how does she look?” With tears in his eyes he said, “She looks great,” the proudest and most in awe that I’d ever seen him.
