Quality of Life

Before Rebekah was born, we were told many things about what to expect because of her diagnosis of Trisomy 18. None of them were positive. It went beyond describing her as 'incompatible with life'. At one point when asking how far should we go to help her, we were told to save our money because we have four boys to send to college. When requesting a caesarian section in case of distress, we were told no, that it was too dangerous to me (the mother) and that trying to help a child like Rebekah was not why that person became a doctor. When exploring how best to address Rebekah's early blue spells and apnea and looking at the option of a tracheostomy, we were told that we would regret our decision a year down the road. When asked for an explanation of Rebekah's brain MRI, we were told that Rebekah is noncommunicative and may develop a little bit, but will then start regressing and basically be a vegetable, so we need to stop doing to her and start thinking about how to just make her comfortable.

All of these comments and opinions were based on a false assumption... the assumption that Rebekah's 'quality of life' would be or is poor and that her existence negatively affects our family.

What is 'quality of life'?

• a term used to evaulate the general well-being of individuals (subjective well-being)
• what makes life worth living
• the extent to which people's 'happiness requirements' are met

I like one definition from grdc.org: Quality of Life is the degree to which a person enjoys the important possibilities of his/her life. Possibilities result from the opportunities and limitations each person has in his/her life and reflect the interaction of personal and environmental factors. Enjoyment has two components: the experience of satisfaction and the possession or achievement of some characteristic, as illustrated by the expression: "She enjoys good health." Three major life domains are identified: Being, Belonging, and Becoming.

Rebekah had an appt last week with her Developmental Pediatrician. His name is Dr. Desmond Kelly and he is such a compassionate and understanding doctor.  We updated him on all the new things Rebekah has started doing in the last 6 months.

He had this to say about Rebekah:

• She seems to be genuinely happy.
• She explores her environment.
• She entertains herself.
• She has self-esteem and looks pleased when she accomplishes a task.
• Her highest area of development is her social skills.
• She recognizes and reacts positively to her family.

I said to him, "Wouldn't that constitute a good 'quality of life'?"

His response was agreement. "She obviously loves her family and brings you great joy. That is what it is all about."

How well stated! If only more doctors would look at 'quality of life' with the same view! And if you go back to the definitions of quality of life - I think Rebekah has mastered all the areas from her view: well-being, happiness, being, belonging, becoming, loving. She is, to us, all that God meant her to be. And I would say her quality of life is better than most people in the world. Even more importantly, she makes OUR quality of life better too.