Laurie Strongin knows what kind of mother would go to any lengths to have a baby who might save another child’s life.
Her son Henry was born with Fanconi anemia
She and her husband, Allen Goldberg, were among the first couples to use this controversial technology.
But every attempt failed, and in 2002 at the age of 7, Henry died of complications after a bone-marrow transplant from an anonymous donor.
Today, Ms. Strongin supports genetic testing on embryos and explains why people can stop worrying about “saviour siblings” being harvested for spare parts.
Your new book, Saving Henry, combines exhaustive medical details with vivid anecdotes about your son, such as his love of Batman costumes and cherry-cola Slurpees. Why did you write it?
I wanted my two other sons, Jack and Joe, to really know how hard we fought to save their brother’s life, and to get to know him better. Another reason is that stem-cell research and embryonic stem-cell research and “designer babies” are talked about in abstractions, and I wanted to humanize these important issues by talking about them in the context of Henry’s life.
People have no qualms about getting pregnant to provide a playmate for their first-born. Why do they recoil at the notion of creating a sibling who could save a child’s life?
In our case, we were a couple who desperately wanted to have a third child, and a child who would not be born with a fatal disease. The fact that that baby could also save the life of an older sibling – I mean, think of that, to be born a hero – is a pretty amazing thing as well. But I think simplifying what we did to be just creating a baby to save another child is a very incomplete picture.
What kept you going through nine failed cycles of IVF?
Well, the survival rate for bone-marrow transplants with the kind of Fanconi that Henry had, in the absence of a sibling donor, was zero. [Her second child, Jack, who was conceived naturally before their attempts at IVF, was not a genetic match.] And so this technology was really a matter of life and death for our family. It’s true that each time it didn’t work it was devastating because the stakes were so high. But the hope that it provided was a very powerful motivator.
Your doctor did genetic testing on three-day-old embryos of about eight cells. How should this technology – pre-implantation genetic diagnosis (PGD) – be used responsibly?
To me, to use it to screen out fatal childhood illnesses, it should be embraced. I also believe in using it to find a genetic match, because these are life-saving technologies. But using PGD for parental preferences like eye colour or hair colour or the propensity towards a higher IQ or better sports ability is a real abuse of this technology.
Ethicists worry that couples might terminate a pregnancy after taking cord blood from a fetus to save an older child. Do you think this is a legitimate concern?
No. I think if you’ve got a child who has serious health challenges, you understand the preciousness of life. I would rather the conversation centre on the right and proper use of this technology instead of fears of something no reasonable person would ever do.
The movie My Sister's Keeper, based on Jodi Picoult's novel, is about a “saviour sibling” whose health deteriorates because she is forced to supply vital tissues to her chronically ill sister. How realistic is this story?
