Victoria

On Memorial Day in 2016, I ended up in the emergency room with sharp abdominal pains. At first, the doctors thought I had kidney stones. In truth, I was in premature labor. After some monitoring and medication to stop labor, the doctor’s next concern was addressed: my belly size was measuring ahead of schedule. The plan was to get an ultrasound after the holiday weekend.

Arriving for this appointment, I thought nothing of the fact that my baby would be large. Although I am a mere 5’3 my husband stands a foot taller than I do. The scan shocked all of us. I was only 30 weeks pregnant, and our baby was almost 7lbs! They also told us she had enlarged ventricles. During the same visit, the doctors decided to monitor me for high blood pressure, which would later become preeclampsia.

Two weeks later, after our local hospital referred us to a bigger specialty hospital, they performed a fetal MRI. This scan confirmed our baby had hydrocephalus from a narrowing in the aqueduct, specifically called aqueductal stenosis. We had never even heard of hydrocephalus before that day.

Everything after this felt like a nightmare. Instead of “nesting” and putting together a nursery, as many pregnant women do a few weeks before delivery, we were touring the NICU. We met the large team of specialists who would be set in place on the day of our baby’s delivery. We also met the neurosurgeon who explained to us the treatment options: an endoscopic third ventriculostomy (ETV) and shunt procedures. Ultimately, they let us choose, as she was a candidate for both. We chose the ETV.

Victoria, whose name means goddess of victory, was born in July 2016, a month early due to my having preeclampsia. She weighed in at a whopping 8 lbs 1 oz. I had an induced labor, and due to complications after 42 long hours, she was born via C-section. This traumatic birth stayed with us for the weeks to come.

Victoria had the ETV done at a week old. It was noted during surgery that there was blood within her ventricles, which we were told suggested she had a stroke in utero.

After a two-week NICU stay and passing all of her tests, we finally brought Victoria home. This moment of relief was short-lived. Victoria began projectile vomiting soon after bringing her home. An MRI revealed the ETV had closed, and brain surgery was set for the next morning. During the surgery, due to anatomy shifting, a vein was too close, and the attempt at a repeat ETV caused a grade three intracranial hemorrhage. The doctors made the decision to place a shunt at that time. She faced a long road of recovery, including secondary incision healing.

Victoria’s shunt lasted seven glorious years! She remained a healthy girl despite a rocky start. However, that all changed beginning in the summer of 2023. Victoria began having intermittent shunt failure symptoms. This was something we were not taught to look out for and was very different from her experience as an infant. She was unable to stay asleep, waking 5 or more times a night, had urinary incontinence, and a sensitivity to sound. Unfortunately, during this period, she was diagnosed with epilepsy as well, and the medication was causing vomiting.

So off to the ER we went to investigate what was happening. Scans showed Victoria had enlarged ventricles. After scans confirmed her shunt was no longer working, we met with a new neurosurgeon at the same hospital. We were told that the catheter to her shunt was cracked; it had broken down over time.

A repeat ETV was done just two weeks before Christmas. Victoria lived shunt-free until the following February when a fluid pocket filled under her scalp. She was not symptomatic until later in the day, only complaining of a headache. Victoria had a shunt placed again, and it has been a success for two years.

Victoria has gone through many challenges, but that doesn’t defeat her. She is the first student in her school district with hydrocephalus. We celebrate her “shunt anniversary” every year by sharing a treat and educating her classmates about the true warrior she is.

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