Wednesday, January 14, 2009


"Life shrinks or expands in proportion to one's courage." Anais Nin

Reading the quote this morning has caused me to reflect on courage. I have chosen two patients who I believe have responded to a situations in different ways and each response required much courage.

I have known both these women for most of their adult lives. The first is now a forty five year old executive with a large local firm. Her husband works from home to be with their three children full time. The youngest son, now nine, was born with Down's syndrome or trisomy 21, an extra twenty-first chromosome. Andy is the light of this family's life. He has brought humor and happiness in to the family. They feature him prominently in their family photos. It is easy to that tell he has the love and respect of his older brothers.

The assurance with which this family deals with Andy's disability was not always a given. It has come from nine years of learning everything about Down's syndrome. I know that there were times they have had to advocate with health care services, the school district and other agencies to get the care that Andy needs. It took courage to choose to have a child after Pam reached what we in the medical community call "advanced maternal age." I am sure that there was some magical thinking own their part at that point. "It won't happen to us. We have two healthy children. Pam is healthy."

I always spend longer talking with these couples, making sure that they truly understand the risk without trying to push them into testing they do not want. If they are committed to the pregnancy and would not terminate, are they sure that finding out earlier would not help them prepare? Pam and her husband were committed. They were heart broken when baby Allen was born but their love for him never wavered. Gathering their courage, they immediately began collecting information and enlisting help for their son.

My other patient was also over age thirty-five and pregnant with her third child. She and her husband quickly accepted diagnostic testing when I offered it. I had delivered their two daughters and I felt I knew them well. Yet, when the test results return and I called to ask the couple to come to my office to discuss them, they wanted to come immediately with Tom leaving his work as an attorney in the middle of a deposition. Sandra is a wonderful mother who does not work outside her home. She cherishes her children and you can see the love and hard work that goes into her mothering.

When I revealed the fact that their son had Down's syndrome both of them cried, hugged each other and ask for some time alone. When I return to my office fifteen minutes later, Tom spoke first. "Before Sandra had the amniocentesis we discussed this and decided that we would terminate the pregnancy if the baby had Down's syndrome." I again felt the need to discuss the fact that this was not a lethal condition. Again Tom spoke about their decision and how they had made it, weighing the effects of either choice on their family as a whole. Sandra held his hand and nodded. "We have reviewed our options and we feel that this is the right action for our family.

Eighteen months after terminating that pregnancy, Sandra gave birth to a healthy, chromosomally normal son. Many times during the course of both pregnancies I thought about this couple's courage to choose the course that they believed to be right for their family. Now as I see Sandra and look at her family photos I detect a sense of loss for the son who had Down's syndrome but I do not detect any regret about the decision she and Tom made.

Both of these families met a challenge in different ways. Each way required courage. Their lives have expanded with the courage to live into the decision they made.
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Snad said...

A few things struck me about this post, MD.

First, isn't it good and right that each of these families had the OPTION?

Second, don't forget about those who choose to not have children when these risks are present. They too, often show great courage.

local MD said...

Yes it is right and good that the option is there. It is also right and good that both of these families found the support that they needed from extended family, friends, and community. I also agree that choosing not to have children can be a wise and couragous choice for some and that we should support this option as well.