I was 26 weeks pregnant in October 2018 with my first. Boy or girl? My fiancé and I wanted a surprise. Well, it just so happens we got the ultimate surprise when we discovered that our baby in utero had hydrocephalus, a buildup of cerebral fluid in her brain. We found out by fluke, and it was the day before our wedding.
That Friday morning, I had gone in for a routine ultrasound for something unrelated to my pregnancy. The technician happened to notice that something was very wrong. Until then, my pregnancy had been smooth sailing—no nausea, no pains, baby kicking frequently, perhaps just some fatigue.
I didn’t understand the gravity of the situation until I Googled “severe ventriculomegaly” and “hydrocephalus”, terms that sounded only vaguely familiar and ones I could barely pronounce. The feeling of total dread and sickness grew in my stomach by the minute. My husband and I were dumbfounded.
My care was immediately transferred to Mount Sinai Hospital in Toronto. The highly talented and knowledgeable doctors at Mount Sinai Hospital said it was critical we try to bring our baby to full term and so I made the decision to immediately stop working and rest for the remaining two months. Needless to say, those two months were the most emotionally overwhelming and stressful months of our lives.
They couldn’t tell us if our baby would be able to walk, talk or eat. Likely she’d survive but they couldn’t guarantee it should there be complications at birth. It was our introduction to the “wait and see” routine.
I hardly cried to be honest. Instead, my husband and I used all of our energy and time to delve as deep as possible into learning and preparing. We learned about Cerebral palsy and different therapies, and read books like “The Boy Who Could Run, But Not Walk” by Dr. Karen Pape and “Kids Beyond Limits” by Anat Baniel. We harnessed and grew our sense of hope through reading “The Brain That Changes Itself” and “The Brain’s Way of Healing” by Norman Doidge, FRCP. We were fortunate to have had so much time to prepare because we now know the window of neuroplasticity in babies and children is invaluable.
Our daughter was born on January 1, 2019 at 40 weeks and 2 days. To our extraordinary relief and the amazement of doctors, she was feeding well and behaving like a “typical” baby. She was monitored closely for several days at Sick Kids Hospital, and then we were finally sent home with our newborn to get settled in and learn how to be new parents.
Things were going wonderfully until one month later, we noticed her head jump in size (two centimeters in less than one week). We took her to ER at Sick Kids Hospital and they confirmed that the fluid was indeed still enlarging the ventricles—she would need brain surgery at just 4 weeks old to have a shunt placed. The surgery went fantastically well and after several days we took her home once more.
One month later and we noticed her having difficulties using her left hand compared to her right due to her pre-birth complications. As we were getting started with physiotherapy and The Anat Baniel Method, questions about her vision began to surface. It became obvious that she was behind on fixing and tracking. She wasn’t recognizing us or smiling on sight.
And thus our Cortical Visual Impairment journey began. We started implementing techniques for improving her vision in April 2019. Today, our daughter is in Phase 1 on the CVI Range. She is glancing at familiar objects more frequently, but not yet fixing or tracking. It melts my heart when she smiles upon sight of her bright red Elmo stuffy.
We know we have a long way to go but we’re embracing our story. We are determined to make this a positive experience, one that we can learn from and help our daughter thrive through. We’re grateful for all the helpful resources available and encouraged by the stories other parents have shared.
Since it’s a relatively new topic and there is still much research underway, there are not that many resources available (yet). For this reason, I’m sharing our story here and will be keeping this blog updated with our learnings and ideas in helping our daughter progress. Hopefully they can help your kiddo too.
Cindy lives in Elora, Canada with her husband, beautiful daughter and super sweet Chihuahua.
Cindy has a deep interest in Cortical Visual Impairment (CVI) and is currently studying Early Childhood Education. She focuses most of her time on her energetic daughter: playing, cuddling and helping to make her world visually accessible. Cindy holds a degree in Marketing and has worked in the not-for-profit sector for many years.