I’m really late in posting this, but I never actually typed it up until today.  The HRSA Advisory Committee on Heritable Disorders in Newborns and Children met again on January 21, 2010. I presented public once again and spoke after Stacey Barrett, who told the committee that her son Liam “was born in the wrong state”.  He was born in Oregon, a state that did not have newborn screening for SCID.  As a result Liam contracted several infections before being diagnosed with SCID.  Ultimately, Liam passed away.  His 1st birthday would’ve been January 30th, only a few days after the meeting where Stacey and her husband James spoke.

I asked James and Stacey to leave the picture of Liam up on the table while I spoke. Since the committee had heard me speak several times and had heard Ray’s story more than once, I decided to present a different type of comment.  I decided to discuss how we as a population view and accept grief. Following is my public comment:

My name is Barbara Ballard, and this committee has heard me speak before. Many of you may remember I’m the mother of a child with X-link SCID. I run a support network for families with SCID and I’m also on the Board of Trustees for the Immune Deficiency Foundation.

I found it very apropos that we were able to hear this morning a presentation on morality in regards to newborn screening; because I wanted to bring up that subject today myself. It was the philosopher, Peter Singer, who queried society’s morals by asking the question, “if you see a child drowning in a pond and you can save that child without any risk to yourself, other than you would ruin a $200 pair of shoes, would you save that child?”

Most people incredulously answered; that of course they would save the child. But when asked if they would write a $200 check to save 100 children, significantly fewer people said they would write such a check. The human psyche does not grasp the same feeling of loss and grief on a large scale. We cannot feel it viscerally. Even if the loss is of 10 children, we do not feel 10 times the grief and loss we would feel over the loss of one child. We do not even feel it twice as much. In fact, when studied, it was learned that the higher the number of children lost, the less we as a population feel it because it no longer is a visceral feeling that can been see and touched and realized.

We all need to remember that Liam Barrett was that drowning child. And that you, the members of this committee, stood on the edge of that pond looking at your shoes. When you next vote on whether or not to recommend the testing for SCID as a universal newborn test, I want you all to take a good look at your shoes, and I want you to remember Liam Barrett’s face. And I want you to hopefully grant him his birthday wish by casting your vote to recommend universal newborn screening for SCID.