Our society needs to understand that care and attention to those of us who are most vulnerable, and who differ from the norm is what defines us as compassionate and enlightened people. Medicine the way it was practiced for Rowan was very, very far away from this.

We believe Rowan died because his doctors saw in him only the average of all other William’s syndrome patients they had treated. It would have just taken one moment to stop and really think about the questions we repeatedly asked about anesthesia, one moment to look at the literature (as we and others have) and make a choice to dig a little deeper rather than relying solely on their internal standard of care.

This is one of the hardest things I have every had to write, but it is necessary for me to be able to tell the story of how and why Rowan died from what I know and have learned, so I will be able to tell the world how he lived, thrived and changed my life in so many ways.

To do this, I have had to look through the medical records from the day Rowan died, and re-live that awful time over and over, with tears that cannot be stopped running over the papers. I have had to look through the scientific and medical literature to get objective answers about the real risks of general anesthesia for Rowan and children like him, as this was information that his own doctors either didn’t have or were unwilling to share with us.

The answers I found have made me unfathomably angry and filled me with despair. The worst is the knowledge that, no matter what I have learned about the mistakes that were made and what should have been done that would have led to Rowan being alive today, nothing can now be done to bring him back. All I can do is shout this from the rooftops and look for a time when I can remember my beautiful and amazing son with both tears and smiles, and hope to celebrate his life and the sheer joy he brought into this world.

With Rowan in my heart,

Daniel, Rowan’s dad

(Rowan’s father is a research scientist and an Assistant Professor at the University of California, San Diego)

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