After struggling with infertility for two years, I became pregnant with triplets. At my 20-week ultrasound, I found out Baby C--known today as Julia--had Hydrocephalus. To say I was devastated is an understatement. I had never heard of Hydrocephalus, didn't know what it meant, didn't know how to treat it, etc., etc.
So, my husband and I met with a genetic counselor who left me feeling helpless and believing that my daughter would never live a normal life. My daughters were born at 35 weeks, 2 days, and Julia weighed in at 3 pounds, 12 ounces. She stayed in the hospital for three weeks and was slow to gain weight. Her testing showed that her Hydrocephalus was caused by Aqueductal Stenosis.
Julia had her first surgery to insert her shunt when she was three weeks old and weighed a tiny four pounds. All was well until she was 14 months old when she needed her first revision. She showed none of the classic shunt failure symptoms other than an increased head size. She had her first revision and was fine until she was three years old.
At this time, my daughters started preschool, and Julia started complaining that her head hurt, and she would sleep during the day and wake up vomiting. I knew something was wrong. We went to the ER where she had CT scans which all came back normal. We went to the neurosurgeon who said nothing was wrong.
You see, Julia now has slit ventricles that do not expand during a malfunction, so we kept getting told it was not her shunt.
But, my mother's instinct knew better. Julia suffered for six months before her neurosurgeon finally agreed to do exploratory surgery. That was four and a half years ago, and Julia has been doing great since!! I have never met a more stubborn, bossy, manipulative yet smart, funny and sociable child.
She excels at reading and spelling. She takes gymnastics and jump rope lessons. She enjoys everything her sisters enjoy. Nothing stops Julia! Most of the time, I forget about her Hydrocephalus and am only reminded of it when I'm washing her hair and feel her shunt. Not a day goes by that I am not grateful for my daughters and for their good health.
I pray that one day, every child with Hydrocephalus will be able to enjoy a lifetime without surgeries. I never want to see Julia endure another shunt failure and subsequent surgery again.