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Tuesday, March 2, 2010

Mother Details Efforts to Use Science to Save Her Dying Son in New Book

This Q & A appeared on AOL’s home page and in ParentDish on Saving Henry’s release date, March 2, 2010.

by Melissa Kossler Dutton

Laurie Strongin’s new book, Saving Henry, details her family’s struggles to save their dying son.

With a young son in need of a bone marrow transplant to beat a deadly disease, doctors urged Laurie Strongin to get pregnant. The goal: genetically engineer a perfect donor for Henry.

Using science to conceive a third child and save her oldest son’s life seemed almost “too good to be true,” Strongin, of Washington, D.C., recalls. The strategy, which the family and their doctors pioneered, raised ethical debates among researchers and parents, and was dramatized in a best-selling novel.

Henry was born in 1995 with Fanconi anemia, a rare genetic disease that causes bone marrow failure and can lead to leukemia and cancer. Her second son, Jack, did not have the disease but was not a genetic match to Henry. Doctors offered Strongin and her husband, Allen Goldberg, the opportunity to use preimplantation genetic diagnosis to select and implant embryos that did not carry the disease and would be a genetic match for Henry. Strongin underwent in vitro fertilization with the hopes of carrying a child whose umbilical cord blood could be used for a bone marrow transplant for Henry.

“There’s clearly a benefit to being in a family that has not experienced the death of a child,” says Strongin, of her decision to pursue the procedure.
After nine failed attempts, Strongin gave up on in vitro fertilization. She and Goldberg later conceived a third child, Joe, who was born healthy but not a match for Henry. Henry, who received a transplant from an unrelated donor, succumbed to his disease in 2002 at age 7.

Strongin, who details her family’s journey in a new book, Saving Henry, shared her harrowing experience with ParentDish.

ParentDish: How does it feel to have this book published?
Laurie Strongin: It was like getting through another part of my life with Henry that was challenging and exhilarating. It fulfilled a desire to spend time with Henry.

PD: Are you worried that people will find the book depressing?
LS: It’s such a story of hope and such a story of the promise of science. People have said they felt exhilarated and determined to be a different kind of parent after reading it.

PD: What message would you like readers to take from the account?
LS: Make each day meaningful, and what really matters and what’s important is the impact that one life can have on the world and so many other people.

PD: What impact do you think Saving Henry will have on conversations about pre-implantation genetic diagnosis (PGD) and creating babies to save the life of a sibling?
LS: This book really humanizes the debate about those issues. Now, when people talk about those issues (they) have a boy to help guide them — make the conversations more real.

PD: What was your reaction when you learned that it would be possible to select embryos to create a child that could be born healthy and a genetic match for Henry?
LS: We thought a lot about it, but there was never a point where we said this is not a good idea. It was a matter of life or death.

PD: What would you have done if genetic testing would have revealed that your second baby, which you conceived naturally, also had Fanconi anemia?
LS: I can’t even answer that hypothetical. I don’t know because it didn’t happen. I was very grateful we had choices. I don’t know if I would have gotten pregnant if I didn’t know I had choices.

PD: Many people debate the ethics of screening embryos for genetic traits. What are your thoughts on parents using the testing?
LS: PGD is an invasive, painful, time-consuming and expensive procedure that should be used sparingly by doctors and patients to help families produce healthy babies. For couples with a high likelihood of passing along a fatal disease to their child, it replaces luck with certainty in a situation fraught with life-or-death stakes.

I do not understand, nor support, the use of PGD to produce a girl or boy for ‘family balancing’ or a baby with a preferred eye color or hair color, propensity for a high IQ or heightened sports ability. This corruptive application of a life-saving technology threatens to turn public sentiment against its intended and higher use.

PD: After your second child was born healthy, you started in vitro fertilization to have a third child that could donate cord blood to Henry potentially save his life. Was the decision more about saving Henry or growing your family?
LS: To think that we were conceiving a third child who would be loved any less is misplaced. It’s not what it is. Most loving committed parents do anything for their children. The fact that a baby is a savior doesn’t mean it’s loved any more or less for it. We were always planning to have multiple children. We just thought we would have three kids.

PD: Did you ever consider having another child after Henry died?
LS: We were never trying to replace Henry. We never had any additional children after Henry died. We love the fact that everyone in our family knew each other, and we were all here together. It would be hard to have another child that Henry didn’t know and who didn’t know Henry. That was unimaginable.

PD: During your in-vitro attempts, you endured 353 injections over three years and dealt with excessive bruises on your stomach and thighs. How did you handle the discomfort?
LS: None of it really bothered me at all. It paled in comparison to Henry and what he had gone through. It was just what I had to do to save his life. Webelieved it was our only hope for Henry.

PD: How did you survive the emotional roller coaster of the nine failed attempts at in-vitro?
LS: It was a waste of time to feel sorry for ourselves. We had no guarantees of how long Henry would be with us. Getting in bed and pulling the covers over our heads felt like a bad choice. There wasn’t any time to feel sorry for ourselves. There was too much fighting to do.

PD: Jodi Picoult’s novel, My Sister’s Keeper, dramatizes the issue of a child being conceived to save the life of her sister. The fictional parents and their decision are portrayed in an unflattering light. What are your impressions of the book, which was written after a New York Times Magazine article about your efforts to save your son?
LS: I’ve never meet Jodi Picoult and never spoken with her. When I read the book, I thought, “This sounds very familiar.” I think it took a nuanced, very gray issue and made it very black and white and aroused fear in people.

PD: You’ve met families that were successful in conceiving a baby to save another child. Does the book capture that situation?
LS: I felt like those parents (in the book) were far less attuned and less in love with the other two children. Their actions were unfamiliar. I don’t think I have anything in common with that mother. I found it troublesome.

PD: Does the book offer a realistic picture of what it’s like to be the child created to save a sibling?
LS: My understanding is the donor can never again give blood cells. The donor daughter constantly was giving blood. I don’t think that happens. I don’t know what the likelihood is, if the transplant failed, that they would go back to the same donor.

PD: A lot of people disagree with the practice of creating donor or savior children. How do you respond to them?
LS: My guess is people who judge others … probably don’t have a child who is going to die without the stem cells of a sibling.
[Knowing] you saved the life of an older sibling who now you have a loving relationship with, it’s a beautiful thing.

PD: What issue would you like to see get more attention?
LS: The potential of stem cell research. Doctors can understand what diseases look like at earlier stages [and become] better able to find and improve treatments and cures. That’s critically important.

PD: How has Henry’s death impacted your other children, Jack, 13, and Joe, 8?
LS: Growing up they each had a very different relationship with Henry. Jack was turning six when his brother died. He was very aware that his big brother and best friend had died. Joe was one. He has no active memory of Henry. Jack is a lot more private of Henry. When he meets people, he will not share that piece of information. But he thinks about him a lot. Joe is really interested in connecting himself (to Henry). He tells people, “I have two brothers. Jack is 13. My brother Henry died.”

PD: Do they feel guilty for living?
LS: I don’t think they feel any guilt for being healthy. I feel like their overwhelming feeling toward Henry is pride. They look at him as a really courageous person.

PD: You’ve said having a sick child impacts every aspect of your life. What kind of financial impact did it have on your family?
LS: We always had a roof over our heads. We always had food on our table. We did go through almost all of our savings at that time, but that’s what it was for — to keep us all intact and as healthy as we can be.

PD: What political changes would you like the book to spark?
LS: The freeing up of federal resources to support stem cell research is critical. As genetic testing becomes more widespread, I hope there will be regulation of the industry.