Hydrocephalus Canada

Our Miracle

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Jeffrey and I were married at age 25.We were told that it would be difficult or impossible to have children, but we were blessed with our first child Austin just 9 months after our honeymoon. On Austin’s first birthday, we discovered that another was on the way. Another healthy pregnancy, or so we thought, right up until the day our daughter was born.

In April, 2005 I went into labour with Emily. We arrived at the hospital to find that our baby was breech and needed to be delivered by C-section. It all went so fast and before I knew it, our little angel was born. They placed her on top of me for a moment and then quickly took her away.  I could tell that something was wrong.  I could hear whispering and saw a nurse talking with my husband Jeffrey.  I remember so vividly when he whispered in my ear “I think she has spina bifida”. I remember feeling panic and being terrified.  “What is that? What does that mean? Is she going to be okay?” So many terrifying questions. I wanted answers. I felt devastated. There are no words to describe this feeling. It seemed like a lifetime before the doctors came in to talk to us. 

Emily looked so precious, so tiny, and so beautiful. We couldn’t tell by looking at her that anything was wrong until a nurse changed her diaper and I could see that there was a sac on her back. They finally came in and told us that they believed our baby had spina bifida and she needed to be taken to the Hospital for Sick Children in Toronto. They took her from me and put her in ICU until an ambulance was available to transport her. We tried to ask questions, but they had no answers. My husband went with her because I just delivered by C-Section and the hospital wouldn’t allow me to go. He looked terrified although he was trying to be strong for me. It was horrible having to stay behind without my baby. 

Later that day, Emily was diagnosed with spina bifida. This birth defect has left Emily with decreased control of her lower limbs and has also affected her bowel and bladder functions. She has no control and requires the use of a catheter and a daily enema. As if that wasn’t enough, she had a tethered spinal cord at age one. Her tiny little spinal cord got stuck on scar tissue and was being pulled and stretched. Fixing it required a very dangerous surgery that has resulted in even more life-long, complex, day-to-day needs.
When our little angel was born, we knew nothing about spina bifida. We were devastated and had no idea what to do – we felt lost and had many unanswered questions. The Spina Bifida & Hydrocephalus Association of Ontario (SB&H) offered us a lot of information and support.

Emily has been through more than the average person would have in a lifetime – hundreds of doctors’ visits, tests and surgeries. Since birth, she has been followed by the most amazing and caring healthcare team.

Behind closed doors Emily deals with many issues such as daily and nightly bladder and bowel accidents, back/leg/foot pain, headaches, learning difficulties and the list goes on. It is very important for her to stick with a daily routine. Any change causes many problems. Life is a struggle, but Emily perseveres. She is so strong and brave.

Emily is a miracle, OUR miracle. By looking at her, you would not even know anything was wrong or that this beautiful little girl suffers so many problems behind the scenes. She jumps, runs, plays, sings and does everything any other child her age does. Emily enjoys singing and attends private voice training lessons with an affiliate teacher of the Royal Conservatory of Music. She has won first place awards for her age group at a local music festival. She’s blessed with an amazing vocal talent.

Currently in grade three at her school, Emily requires lots of support with bathroom routines and educational assistance for her learning difficulties. She loves school though, and is lucky to have teachers who care and help her reach her goals.

Without SB&H, I would not have known where to turn. Our family owes a lot to SB&H for being there when we so desperately needed them. It’s wonderful that this Association exists to give support, share information and speak from experience. I’m not sure what the future holds or what struggles lie ahead for Emily. But, I DO know that SB&H will always be there for us. That gives us hope and there is nothing more important than that.

By Charlene, Emily's Mom