Lilah’s Story

It all started on May 14th, 2016 when I found out I was pregnant. A mixture of excitement and nervousness filled the lives of my boyfriend Daniel and I. We had our first ultrasound a few days later and told our families soon after. It was all such a whirlwind of emotion that set the pace for planning for our new baby, due January 13th, 2017. I went to all of my scheduled prenatal appointments, took all the tests, took my vitamins, and changed my diet and lifestyle. Everything was perfect. We opted to find out the gender early at 15 weeks because we were so excited. Daniel chose the name Lilah for our beautiful baby girl. At the 20 week anatomy scan, where most major problems and defects are found, we were told everything looked perfect. Halfway there and we couldn’t be happier! More of the same continued. Appointments, buying baby clothes, planning a baby shower, my belly growing and growing… At 28 weeks, we had the opportunity to have a 4d ultrasound done just for fun. I wouldn’t have another ultrasound until a couple weeks before my due date and I loved seeing her cute little face, so why not? The ultrasound tech started with the regular imaging to see how Lilah was positioned before switching to 4d. After a couple minutes of silence, she asked who my doctor was. I told her, thinking that it was a little strange she asked. More silence. Then she looked at me and said “I need to go get your doctor.” I stared back at her, a sense of dread formed in my stomach. I began to fear the worst, but I had just felt her move a little bit ago, how could this be? “There is something wrong with your baby. She’s alive, but I need to get your doctor.” It sounded like my head was under water. I couldn’t comprehend what she was saying. There is something so messed up about hearing someone say your baby is alive. I know it’s obviously a good thing, but in the context of someone trying to reassure me that she is, a trail of fear follows it.  Why on earth would she have to say that to me? The tech left us in the dark room in a hurry and closed the door. I stared off into to darkness for what seemed like an eternity. The room was silent, my mind was silent. I had no idea what to think or feel yet. I looked over at Daniel, who I could see felt the same. The tears started rolling down my face and then he got up to hold me. After some time, the tech and my doctor came in. I looked at them with sheer horror. She told him that the ventricles looked enlarged. What did that mean? She started scanning my belly more to show him. The moment I saw his face turn into a frown was the moment my tears turned into sobs. He didn’t have to say anything, I knew something was very wrong. That was the worst moment in my entire life. Something was wrong with my baby girl… The doctor said he wasn’t specialized in this stuff, so he couldn’t say much, but he said the fluid filled ventricles in her brain were enlarged and he suspected hydrocephalus. We would have to see specialists an hour away for a diagnosis. Two days later, we were seen by the high risk doctors at our children’s hospital. They did an ultrasound, an MRI, blood work, we were seen by two maternal fetal doctors, a geneticist, and a few other people. Their main cause of concern right then was hydrocephalus, which can cause brain damage from the pressure of the growing ventricles. Her case was very severe with her ventricles measuring in the mid 20’s and they are supposed to be no more than 10mm. They also found through the MRI that she was missing her septum pellucidum and part of her corpus callosum, both pieces of her brain. They told me that she would have to be monitored weekly for ventricular growth and fetal distress. I would also likely have to deliver her preterm. The plan was to put a shut in her head to drain the fluid. Shunts are very invasive and permanent things and would likely need several revisions throughout her life. That means that my newborn child would need brain surgery and then again for an indefinite amount of times as she grows. My perfect pregnancy quickly changed course. The following weeks were filled with appointments multiple times a week (I was also battling gestational diabetes, so there were extra visits for that). I began to feel like I lived at the hospital and my baby was some sort of experiment. I soon sunk into a depression and a sort of self mourning state. Why my baby? Why me? What did I do to deserve this? Was Lilah going to be okay? How were we as a young family going to deal with this? Hydrocephalus can cause brain damage and the missing pieces of her brain can cause physical and mental retardation. How in the world were we going to handle this? We managed to hold off induction until 37 weeks. By that time, her ventricles measured 37mm and 34mm, more than 3 times what they should be. She was born on December 27th at 6.5 pounds with a head circumference of a whopping 39cm. Lilah was then rushed off to the nicu for evaluation and to await surgery. We ended up spending 9 long days in the nicu, which isn’t really a long stretch, but more than enough for me. The poor girl was hooked up to machines, had a little cast on her arm to hold an iv in place, had a feeding tube for a few days, was treated for jaundice, had daily tests, blood draws, mri’s, and doctors constantly poking at her. I spent all day and night with her since the day after I gave birth to her, which made recovery a bit rough. They ended up releasing her with the hopes that she might not need a shunt after all because her condition seemed stable. That was wonderful news. Then the reality of her condition really set in. This beautiful little girl, who I already loved with my whole self, was probably in pain, has a lifetime of doctor appointments ahead of her, might be awaiting shunt placement, and could very well be mentally and physically handicapped. The unfortunate reality of ACC is that it’s very much a “wait and see” disorder. Symptoms can me very mild or severe. Some symptoms you’ll notice if they don’t reach milestones on time, or at all, as a baby, or it might be when they are a teenager and are having social and behavioral difficulties. The reality of that left us in a world of fear and worry. Lilah is now 7 weeks old and regularly sees a neurosurgeon, ophthalmologist, urologist (she was born with mild hydronephrosis), and physical, occupational, and speech therapists, all to make sure she is developing okay. Since leaving the nicu, her ventricles and head circumference have jumped substantially, so the neurosurgeon said shunt placement is inevitable. We await surgery exactly one week from today. It’s terrifying knowing that my baby is going through so much and there is nothing I can do but love her. The momma bear in me wishes I could fix everything, but I can’t. I have wondered what I did wrong and what I could have done differently, but that isn’t how this works. Nothing that happened is my fault and there isn’t anything I can do to change it. We just need to get through this surgery, work hard on reaching our milestones, and love each other fiercely. I know when she is older that we will have such a special bond because of everything we have gone through. I just want to make sure everyone understands what she might be dealing with in the future. I want her to be open and embrace her differences. And I want anyone else who might be in our shoes to feel a little less lonely. You aren’t alone and we will get through this.