Our daughter, Holly Elizabeth, was born six weeks early on August 2, 2007, at Victoria General Hospital. She made her entrance just four hours short of my birthday, which normally would have been a small disappointment to me, but after 30 hours of labour, I was okay with that!
My pregnancy was very difficult emotionally and physically. Several months before Holly’s arrival, she was diagnosed with Dandy Walker Variant and Cardiofaciocutaneous (CFC). Dandy Walker is a condition involving a section of the brain called the cerebellum, located at the back of the brain, which only partially developed for Holly. CFC is an extremely rare syndrome (200 – 300 children worldwide) pertaining to heart, facial, and skin development.
We stayed in the Neonatal Intensive Care Unit for roughly 3 ½ months. Besides the two major syndromes, Dandy Walker and CFC, Holly was diagnosed with a swallowing disorder that required a gastro intestinal tube. There was also a concern that she might need a shunt to drain excess fluid located between the brain and skull (a common feature of Dandy Walker), but it later proved to be unnecessary.
Needless to say, I was very apprehensive to leave the sheltering cocoon of such caring and dedicated doctors, nurses, specialists, and the other wonderful parents we had met in the hospital. We were assured many times that once she was home, under our own community health umbrella, Holly would have wonderful care and support. And of course, they were right!
I was referred to the Clements Centre and my first contact was with the intake coordinator who assessed Holly and helped create a plan for the year ahead. Later, I was introduced to other early intervention therapists. From the start, our battle plan focused on several therapies. Over the next three years I would meet occupational, physio, and speech therapists. All of these women nourished me both as a new mother and as a parent of a child with extra challenges.
Assessments of Holly were always thoroughly and professionally completed with genuine enthusiasm, encouragement, compassion and most importantly for me, hope. As a new mother who had never been around babies, the whole kaleidoscope of motherhood was explored and explained as we began our journey together.
Today, Holly’s development far exceeds what I was led to believe in utero it would be. As a mother, I am so grateful for the guidance, compassion, understanding and knowledge that I received from the staff at the Clements Centre. The work they do and the professional way they do it has changed our lives and given me a breadth of insight into the possibilities that Holly is capable of.
by Sonja Griffiths (Holly’s Mom)
