Free Saving Henry by Laurie Strongin Page A

was healthy and thriving. We were about to start PGD. Everything was good. I returned to the couch, picked up my mug of coffee, and began to read The Washington Post .
    Several pages into the front section, all that was good in my life was quickly forgotten. In bold letters over an article in the front section, I read that Dr. Mark Hughes, our savior, was being accused of violating the federal ban on embryo research with his work on PGD, in violation of the Dickey Amendment. Shocked into high alert, I sat upright and continued to read. My stomach progressively tied up in knots and it got harder to breathe. I could not believe what I was reading. It did not make any sense. Although Dr. Hughes did not conduct any embryo research at NIH, he was charged with violating the congressional ban because his PGD work at nearby Suburban Hospital—where he was already working on our case—employedNIH research fellows and scientific equipment, like a refrigerator , that NIH said had been moved to Suburban without NIH approval. While I read the words on the page, the only thing I could see written in black and white before me was one sentence.
    Henry is going to die.
    According to NIH sources cited in a Chicago Tribune article that same day, Dr. Hughes got into trouble because one of the four research fellows assigned to assist him, all of whom were funded by NIH, was worried that experiments they were conducting violated federal law. Apparently, the fellow reported his concern to Genome Center officials, who ordered the investigation that resulted in Dr. Hughes’s termination. I’m neither a policy expert nor am I supportive of the federal ban on embryo research, so it seemed simply absurd that a refrigerator and one research fellow separated a brilliant doctor from the only chance my son had to live past age five. Dr. Hughes’s work wasn’t violating any law; it was saving Henry’s life. My rage was all-consuming. There I was with my newborn, my coffee, and my newspaper, filled with a fury I had never experienced before. I had no one to yell at, no one to strike. I looked over at Jack, peacefully unaware of his mother’s anguish, and sobbed.
    Each new story further demonizing Dr. Hughes in the Post and other newspapers delivered a new rush of terror and shock and rage. Together they threatened to slap the joy out of my life and steal my dream of Henry’s survival.
    Initially, Georgetown University released supportive statements, but the reality was that Dr. Hughes’s work did not comport with the Jesuit institution’s religious ban on embryo research. Within days, Dr. Hughes resigned from his position rather than agree to terminate his research. But without a job and access to the equipment he needed, he was denied the ability to continue the research upon which Henry’s life depended.
    All the optimism and promise fueled by that first phone callfrom Dr. Auerbach was gone in a flash. We were desperate and scared. We had diapers to change, children to nourish, and a lot of living to do, as one-fifth of Henry’s predicted life span had already passed us by and we wanted so badly to live each day to its fullest, for happiness to win over fear. Allen and I immediately called Dr. Hughes to offer support, but there was only so much we could do, except suffer from the sidelines. Not only did Dr. Hughes have to leave his lab at Suburban Hospital, where he had been preparing for our case, he also faced congressional hearings that vilified him and threatened his career and our prospects. Six months later, as I anxiously read the testimony that Dr. Harold Varmus, director of the NIH, delivered before the investigating Senate committee, I wondered how it could be possible that Dr. Varmus and his staff didn’t know or approve of Dr. Hughes’s work on PGD, given that he had been recruited in part based on this very area of expertise.
    More months passed, we waited, and Henry’s blood counts