Annie's Story: Part One - Preparing for Annie's Birth

Everyone makes different choices for different reasons. When Annie was diagnosed before birth to have a condition associated with physical and developmental disabilities, we researched all that we could find and spoke to many parents of children living with the condition.

It was no picnic, that's for sure. We never deceived ourselves that it would be. Statistically, the odds were heavily against Annie. They told us that she had a fatal heart defect and that she would only live for a few minutes. If she lived, she would progress very slowly. She likely would not have been verbal but would have learned to walk eventually. To be honest, if I was to pass judgement on this situation about someone else, I might question the choice to give such a child a chance. The situation is very different when you bear the responsibility.

We could see that the children living with the condition were an immense joy to their families. Here is one little girl, Mieko, learning to walk at the age of 3. Mieko has a similar genetic condition to Annie. This is Natalia laughing. The parents who love these children are devastated when their children dies, for very few lived past the age of 10. It caused us to search deep into our personal beliefs and priorities to decide what constituted value or quality. It became evident that there was much quality to the lives of these children, just not in the way one would normally judge it.  We accepted Annie's predicted disabilities and decided that what was right for us and for our family, was to give her a chance.

We were fully transparent about our choices and we had meetings with three departments at the Children's Hospital before Annie's birth to discuss the process if Annie needed surgery. We were assured that she would be treated like any child and if surgical considerations arose, they would be discussed and we would arrive at a decision together with her physicians. It is so ironic that we had sound assurances of hospital policies which we would discover one day would be violated a multiple of times.

We absolutely did not want Annie to suffer unnecessarily. We knew that difficult decisions would need to be made. We were prepared for the likely possibility of  Annie's death as we waited for her to be born. 

Part Two : Annie's Life