Friday, December 13, 2002

Henry Goldberg, 7; Illness Led to Controversy

Friday, December 13, 2002; Page B08

Henry Strongin Goldberg, 7, whose parents' fight to save him using pioneering embryo research raised ethical questions and brought his case to national prominence, died of Fanconi anemia Dec. 12 at a hospital in Minneapolis.

Henry, who lived in Washington, was a student at Jewish Primary Day School in Silver Spring when he wasn't convalescing at Georgetown University Hospital.

Doctors in 1995 determined that he had the rare disorder, which causes bone marrow failure. Working with geneticist Mark Hughes, who later resigned from Georgetown because of his research, Henry's parents, Allen Goldberg and Laurie Strongin, produced test tube embryos in the hopes of conceiving a child without the anemia. That child's marrow would be used in a transplant.

Henry needed the transplant before the sibling could be born, and the procedure was performed at the Minneapolis hospital with marrow from an unrelated donor. However, the child of another family that worked with Hughes did receive a transplant of marrow from a sibling conceived for that purpose.

Some ethicists and antiabortion figures denounced the process attempted in Henry's case, saying it amounted to "harvesting" children. Others, including Henry's parents, argued forcefully for its potential to save lives and alleviate pain.

Henry's case was featured in the New York Times, on ABC's "Nightline" and on a family Web site. A "Nightline" producer described Henry as "an energetic, funny, scrappy, resilient little boy."

He had been a member of the Dolphins of the Stoddert Soccer League in Washington and had gone to preschool at Adas Israel Congregation in Washington.

Other survivors include two brothers, Jack and Joe, both of Washington; and his grandparents, Seymour and Patricia Strongin of Washington and Theodore Goldberg of Rockville.

© 2002 The Washington Post Company

I must have been gone longer than I thought. I couldn't figure out which way to turn the knob in the shower to get hot water. Standing in the shower I remember how often Henry liked to get in our shower and just stand there for what seemed like hours. Sometimes when he wasn't feeling so great we'd put a little stool in there for him to sit on. But he just liked to be in there with the warmest water falling over his body until his skin was "pruney." He was also always game for a kiss on the glass. I'd put my lips up to the shower door from the outside and he'd press his lips on the other side of the glass and we'd smooch.

I didn't get a "death notice" in the paper in time. If anyone wants to make a donation in Henry's memory to the Fanconi Anemia Research Fund, their address is

Fanconi Anemia Research Fund, Inc.
1801 Willamette Street, Suite 200
Eugene, Oregon 97401
Telephone: 1-541-687-4658
Fax: 1-541-687-0548