Quality of Life

The term "quality of life" doesn't sound threatening, right? As a pharmacist I can tell you that many medications are covered by insurance just because they can improve one's quality of life. That's a whole other discussion, but I bring it up to say that I am familiar with the term as it is used in medical decision making. However, when it comes to children with conditions such as Trisomy 18 or 13, the quality of life position is often used to prohibit therapies. The argument that because our trisomy children may never walk, talk, or function independently they should be denied life saving therapies (such as heart surgery) is an unacceptable one. Our children are loved and they can show love, too, in their smiles and laughter, in the recognition in their eyes, and in their reaching arms. Such a person is hardly a "vegetable" unworthy of vital medicine. The fact that only 10% of t18 kids survive past one year does not change the more important and compelling fact that this 10% represents living children! Approximately 1100 babies with t18 are born each year, meaning that about the number of children living with t18 increases each year by about 110!
A good "quality of life" is very subjective. Ask a mother in the US and then one in Haiti or Afghanistan or Sudan. The overall quality of life in these places would vary greatly and would be directly related to geographic location and access to food, water, and healthcare. From our wealthy US households we may struggle to understand how a mother of four in poverty stricken Haiti could be happy. This may be similar to a physician in the US using clinical judgment trying to understand how families with trisomy kids can be happy. We must seek better understanding. Our daughter is here and living despite great odds. It shouldn't be so challenging to find physicians (healers!) to support the life that she has.