In her new book, Saving Henry, Laurie Strongin talks about the struggle to save her first son from a fatal illness - by giving birth to the perfect genetic donor.
This technique has received a lot of press and criticism over the past decade, and been the topic of a sensational and popular novel. It’s a strategy that Laurie’s family and her son’s doctors pioneered. In an interview this week with ParentDish, she puts a human face on this controversial practice.
Strongin’s oldest son, Henry, was born in 1995 with Fanconi Anemia, a rare disorder that can lead to bone marrow failure, leukemia, and cancer. It’s treatable, but requires a bone marrow transplant. Bone marrow transplants are notoriously difficult to find a genetic match for.
Her second son was born healthy, but not a match for the donor tissue Henry needed. At that point, his doctors encouraged her to try a new IVF technique called pre-implantation genetic diagnoses (PGD) that would allow them to select for healthy embryos that would be a genetic match for Henry.
Strongin agreed and underwent 9 unsuccessful IVF cycles in an attempt to give birth to a baby whose umbilical cord blood could save her oldest child’s life. She later conceived a third son the old fashioned way. Like her second, he is healthy but not a genetic match.
Henry’s illness took his life at age 7. Since then, other families with terminally ill children have had success with PGD.
There’s been a lot of criticism of the notion of having a “savior baby”. In the abstract, it’s easy to imagine it being a raw deal for the new baby, growing up in the shadow of the older, sick sibling. But Strongin’s voice is so strong, clear and poignant when she talks about the options her family faced, it’s hard to imagine wanting to argue with her about it. Her love for all her kids is so palpable.
She’s the first to criticize using selective implantation of embryos to create “designer babies”, saying:
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.
Reading a mother’s own words about this process made me realize I would do this myself in a heartbeat. Facing the alternative to have another healthy baby whose cord blood might be able to save my dying child’s life, or watching my kid die? There’s really no question there.
It seems worth noting, too, that the key thing doctors needed from the miracle baby Strongin was trying to have was his umbilical cord blood. There’s nothing invasive or dangerous about that procedure for the new baby. In most cases, this precious genetic material just goes in the trash shortly after birth.
In addition to sharing her family’s story, Strongin hopes her book will raise awareness about the value and importance of stem cell research.
Photo: Jon Ovington
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