My heart felt like it stopped beating for one, two, five, 10, 20 beats. My stomach, the part not carrying a baby, felt like it dropped to the floor. 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. Then he asked us to meet him in the Consultation Room. The doctor finished the scan, wiped the goo off my belly, and helped me sit up. I knew - I was sure - she was going to be fine. We’d had enough ultrasounds to see her cute little nose, her kissable little mouth. Sick babies weren’t that active, I told myself.
My daughter moved constantly inside of me and always kicking. As he squirted the gel on my belly and pressed the wand over the baby, I felt confident. He immediately put me at ease and again, I knew, everything would be fine. The doctor, one of the best in the field of fetal and maternal health in our city, was soft-spoken and kind. We arrived at the hospital and were immediately taken to an exam room. 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. I wanted what I thought everyone got: happy, smiling, healthy, safe, chubby, cute, little bundles of joy. I hadn't signed up for this: a sick baby. 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. More and more bricks of fear and self-doubt stacked themselves on my shoulders. Something that I might not be able to fix. But now I had the added fear that there was something wrong with her to contend with. Not to mention once I had the baby I was going to be expected to not totally screw her up. 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. Pregnancy is both an incredible and terrifying experience. And bad things don't happen to good people, so of course we'd be fine - and our baby would, too. My partner and I told each other that we were healthy, we were happy, and most importantly, we were good people. We'd consulted Google – normally a horrible idea – and decided that swollen ventricles, while scary, often had a safe and healthy outcome. Long before we knew exactly what 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. If I was already worried about parenting, how could I parent a child when something was wrong? I felt angry, even resentment towards her. My 28-week ultrasound confirmed my worst nightmare and it threw everything into complete chaos. But that ultrasound effectively ruined the vision I had created for myself of a happy, healthy pregnancy producing a happy, healthy baby. 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. This type of inflammation, known as ventriculomegaly, is associated with a number of developmental disorders. At 28 weeks gestation, her lateral ventricles were double normal size (these are important because they carry cerebral spinal fluid to her spinal cord). Three weeks earlier, a sonographer had seen an abnormality in my unborn daughter’s brain. I just want my baby to be OK, I repeated over and over again on a Thursday morning last April.
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