Hydrocephalus Canada

Raising a child with spina bifida

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by Sharon Ennis

When a woman is pregnant, what is her number one wish during pregnancy? To have a healthy baby with 10 little fingers and 10 little toes.

Well this is where my story begins—with the birth of our third child—daughter Gabrielle. Raising children in this world is not easy. I have come to learn that being a parent is much more than becoming one. Parenthood is a journey not only a destination.

I use to be in the workforce, but that all changed when our only daughter was born in 2007. Gabrielle was born with Spina Bifida and Hydrocephalus. It was a surprise to us when Gabrielle was born with a small portion of her back opened and exposed. Surprised, I stared at something that would change our lives forever.

Spina bifida is a neural tube birth defect (NTD) occurring within the first four weeks of pregnancy. The spinal column fails to develop properly resulting in varying degrees of permanent damage to the spinal cord and nervous system. So you can say, our lives turned down a different street.

It was the Neurosurgeon at The Hospital for Sick Children in Toronto, Ontario, who told us that Gabrielle’s spinal cord and nerves developed outside her body and were contained in a fluid filled sac visible on her back. The exposure of these nerves and tissues made Gabrielle more vulnerable to life threatening infections. I remember sitting, dazed as we listened to him.

Gabrielle required immediate surgery to reduce the risk of infection and to protect her spinal cord from greater damage. It was heartbreaking to watch our daughter undergo two surgeries in the first week of life and listen to her doctors talk about the many deficiencies that she’d live with. I felt as though I was living an awful dream. I wanted to wake up to a whole new world that never spoke the words “spina bifida.”

I was scared to be alone with this new baby, even though she was mine. My mind had so many emotions rushing about, I didn’t know what to think. I had no idea what spina bifida meant and how it would impact our lives.

Before I could allow this birth defect to keep me down and depressed, I switched into auto-pilot because there were two other children to care for. I had to be a Mommy again.

I needed to find the strength and patience to raise my three kids, especially one now labeled “special needs.” Coming to terms with Gabby’s disability was one of the hardest things I ever had to do as a parent. I had to face the fact that she’d have ongoing medical needs throughout her life.

The phrase “special needs” commonly defines what a child can’t do. In my darkest hours, I mourned Gabrielle’s lost potential, as many of her conditions become more troubling. But I can now see how her challenges make triumphs sweeter and her weaknesses are accompanied by great strengths.

My days are usually like any other mother: cooking, cleaning, running errands to the grocery store with kids hanging off the cart, piles of laundry, homework, and bed time battles. What makes us different is, the special care we give Gabrielle so she may experience a normal life.

The reality Gabrielle’s special needs hits me when her schedule and care squeezes into into my own schedule. We often have follow-up appointments at The Hospital of Sick Children to see her Urologist and Neurologist, refilling medications, and restocking supplies.

Gabrielle has inspired us since her birth. She shows us how she accomplishes anything she sets her mind to. Gabrielle is a little girl who enjoys life the best way she knows how—with a lot of laughter. It makes no sense for me to stop living and feel sorry for myself because Gabrielle was born with a birth defect. My focus is all about pressing forward, as a family, with my goals and dreams in front of me. As a mother, I have no other choice but to do my best. And no one can love my children and make them feel more special than me.

I have learned to accept that which I cannot control and to instead focus on the gift given to me at the beginning of this incredible journey. That gift was one of hope for a better tomorrow, a hope residing in the heart of my child.