I just want my baby to be OK, I repeated over and over again on a Thursday morning last April. Three weeks earlier, a sonographer had seen an abnormality in my unborn daughter’s brain. At 28 weeks gestation, her lateral ventricles were double normal size (these are important because they carry cerebral spinal fluid to her spinal cord). This type of inflammation, known as ventriculomegaly, is associated with a number of developmental disorders. After three weeks of diagnostic Level 2 ultrasounds, blood tests, and MRIs and three weeks of doctors speculating about possible viral infections, hydrocephalus, and shunts, we were finally going to get some answers. But that ultrasound effectively ruined the vision I had created for myself of a happy, healthy pregnancy producing a happy, healthy baby. My 28-week ultrasound confirmed my worst nightmare and it threw everything into complete chaos.
I felt angry, even resentment towards her. I hadn't signed up for this: a sick baby. I wanted what I thought everyone got: happy, smiling, healthy, safe, chubby, cute, little bundles of joy. If I was already worried about parenting, how could I parent a child when something was wrong?
Long before we knew exactly what news was waiting for us at the end of that 28-week visit, my partner and I drove to the hospital, I felt nervous but confident. We'd consulted Google – normally a horrible idea – and decided that swollen ventricles, while scary, often had a safe and healthy outcome. My partner and I told each other that we were healthy, we were happy, and most importantly, we were good people. So that meant everything would be fine. And bad things don't happen to good people, so of course we'd be fine — and our baby would, too.
Pregnancy is both an incredible and terrifying experience. I was growing a tiny human inside of me, from a small collection of cells to what would one day become a completely autonomous being. Not to mention once I had the baby I was going to be expected to not totally screw her up. But now I had the added fear that there was something wrong with her to contend with. Something that I might not be able to fix. More and more bricks of fear and self-doubt stacked themselves on my shoulders. Had I done something wrong? Was she going to be OK? Could she be disabled? Could she die? And, selfishly, I felt angry, even resentment towards her. I hadn't signed up for this: a sick baby. I wanted what I thought everyone got: happy, smiling, healthy, safe, chubby, cute, little bundles of joy. If I was already worried about parenting, how could I parent a child when something was wrong?
Here is something I now know to be a universal truth: When a doctor asks to speak to you in a Consultation Room, everything is not going to be fine.
We arrived at the hospital and were immediately taken to an exam room. The doctor, one of the best in the field of fetal and maternal health in our city, was soft-spoken and kind. He immediately put me at ease and again, I knew, everything would be fine. As he squirted the gel on my belly and pressed the wand over the baby, I felt confident. Brave. My daughter moved constantly inside of me and always kicking. Sick babies weren’t that active, I told myself. We’d had enough ultrasounds to see her cute little nose, her kissable little mouth. We'd watched her grow for seven months. Unhealthy babies didn’t grow like weeds.
I knew — I was sure — she was going to be fine. The doctor finished the scan, wiped the goo off my belly, and helped me sit up. Then he asked us to meet him in the Consultation Room.
I found out that my child was missing a part of her brain, a piece of the organ that is so essential to a human being’s existence, my reaction was more than just fear, frustration, and anger. It was physical. My stomach, the part not carrying a baby, felt like it dropped to the floor. My heart felt like it stopped beating for one, two, five, 10, 20 beats. And I cried. I cried and cried and cried and it felt like I didn’t stop for weeks.
Here is something I now know to be a universal truth: When a doctor asks to speak to you in a Consultation Room, everything is not going to be fine. The room was small and white with an old, green pleather couch and requisite faded watercolor prints on the wall. My partner and I held hands and tried to remain positive. But the confidence I'd felt earlier was fading fast. Our daughter had agenesis of the corpus callosum.
The corpus callosum is a bundle of nerve fibers located in between the left and right hemisphere of the brain. The structure is like an information highway, allowing the left and right sides of the brain to communicate with each other. Our brains hemispheres have been compared to two similar but ultimately different people. Though they're one "being," they perceive things in slightly different ways. The corpus callosum allows these two "people" to communicate with each other in order to present a united front to the rest of the body and external stimuli. If the corpus callosum is absent, it becomes difficult for the hemispheres of the brain to communicate with each other and to send signals to the body and transmit information critical to a number of things, like memory formation and muscle movement.
Every time I had rolled my eyes at a crying baby in a restaurant or my husband and I had laughed at how great our childless life was, I imagined the universe had made a mark in my ledger. And every mark had added up to this.
Agenesis of the corpus callosum is a congenital birth defect that affects seven in 1,000 births, though it is impossible to know the true occurrence of callosal disorders because the prognosis varies drastically from person to person. While some people may experience severe cognitive and developmental delays, others may not seem affected at all, and they'll go on to live a completely “normal” life. On top of all the other unknowns, it's impossible to predict how a person’s agenesis will affect them. That not knowing terrified me. ACC can be partial – underdeveloped, but present — or complete, which means it's totally absent from the brain. Our daughter’s was complete.
When I found out that my child was missing a part of her brain, a piece of the organ that is so essential to a human being’s existence, my reaction was more than just fear, frustration, and anger. It was physical. My stomach, the part not carrying a baby, felt like it dropped to the floor. My heart felt like it stopped beating for one, two, five, 10, 20 beats. And I cried. I cried and cried and cried and it felt like I didn’t stop for weeks. That ultrasound was the worst day of my life.
As I sat on that old couch in a room meant to be comforting, all I could think about, all I could imagine, were the ways in which I'd caused this defect in my daughter’s brain. All I could think was that I had failed her. I was a bad mom. I looked for something, anything, I could have done to cause this. In hindsight, I was looking for something I could control. In fact, I think I wanted to be responsible for her agenesis because if it was my fault at least I had control over something.
Because the truth was, I had: eaten an hors d'oeuvre with brie cheese on it. I'd eaten a piece of sushi. I drank a glass of champagne before I knew I was pregnant. I drank tea with caffeine in it. I'd done some heavy lifting. I cleaned the cat litter. I took medication for my morning sickness. I used the heated seats in our car. I used to not want kids, and this was my karmic punishment. I had hoped for a boy and this was my penance for not wanting a girl. I felt like the universe was punishing me by punishing my daughter. Every time I had rolled my eyes at a crying baby in a restaurant or my husband and I had laughed at how great our childless life was, I imagined the universe had made a mark in my ledger. And every mark had added up to this.
A movie reel of worst-case scenarios played behind my eyes: all the ways her ACC could manifest. All the ways it could affect her life: Would she ever read a book Make friends? Would she get made fun of? Ever have a boyfriend or girlfriend Would she get invited to prom? Drive a car? Would she ever tell me she loves me?
Because of her diagnosis, we were now considered to be a high risk pregnancy. Our high-risk status meant we had to go in for ultrasounds and check ups every two weeks. We were also offered the opportunity to speak to a psychiatrist who specialized in maternal and fetal medicine patients. At first, I declined. I didn't need professional help because I had an amazing support group. I spoke to my husband, my parents, and my friends about my fears, the ways I worried, the what-ifs. I continued to make obsessive lists about all the things I could have done wrong. And when they weren't around to talk to, I cried. In bed, in the shower, over breakfast, in the car on the way to work and on the way home, on the couch, in the kitchen, in my daughter's gender neutral green bedroom.
She might not go to prom – but she might not want to. She might get made fun of – but so does everyone; kids are jerks. There is a chance, though it seems smaller and smaller everyday, that she might not be able to speak, to tell me she loves me. But if that is the case, I will tell her enough for the both of us. She will never doubt my love for her.
And eventually, I realized that maybe I needed to see a professional. And she helped. I was able to compartmentalize my fears into two categories: the fears I could do something about right now and the fears I couldn't do anything about. What I quickly learned was that most fears were the fears I couldn't do anything about.
Our daughter was born in May; three weeks early. At 37 weeks, we went for — yet another — routine ultrasound. The sonographer placed the wand on my belly and was silent for a few moments. He then asked me to roll onto my left side. I did, thinking the new position would help her get a better image. She told us she was going to get a doctor. My husband and I looked at each other, incredulous. What had gone wrong now? Returning with an obstetrician and a wheelchair, she wheeled me down the hall to labor and delivery and the obstetrician told us our daughter's heart rate had dropped to 70 beats per minute when it should have been 140. Since I was 37 weeks along, which is technically full term, they wanted to induce. My husband and I looked at each other and then to her and we said, "So we're having a baby today?" All we could think about was the fact that we both had to go to work after the appointment.
It turned out induction wasn't necessary. When she examined me prior to inserting the Foley catheter the doctor found that I was already three centimeters dilated. For the 13 hours from the start of my labor to her arrival, my husband and I smiled and laughed. Our room was a revolving door for friends and family. We had the party room. The nurses were sad to leave us at the end of their respective shifts. Because for those 13 hours there was one thing that trumped all of our fears and doubts about the future and that was the excitement of meeting our daughter.
Eight months later, and she has reached all her milestones. She smiles and plays and makes us laugh every single day. She eats like an adorable little piglet. She charms everyone she meets. And she would have done that with or without a part of her brain. She might not go to prom – but she might not want to. She might get made fun of – but so does everyone; kids are jerks. There is a chance, though it seems smaller and smaller everyday, that she might not be able to speak, to tell me she loves me. But if that is the case, I will tell her enough for the both of us. She will never doubt my love for her.
What I learned on that couch with my stomach at my feet and a pile of tissues in my lap was that I cannot control how my daughter’s brain developed in the womb. Just like I cannot control the books she may or may not read or the kids she encounters in the playground or whom she loves.
I can only control how much I love her. And I love her more than anything. That, I've learned, is enough for a lifetime.