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Losing a child is the saddest experience that any parent can imagine. To try to save a child is an immense act of faith. To live beyond such life-altering events and tell the tale for the guidance and benefit of others is a hallmark of courage. In Saving Henry, we find all these elements combined.
Laurie Strongin was a rather typical first mom when she gave birth to a son who was perilously ill, whose prognosis was grim. Little Henry was diagnosed with Fanconi anemia, a genetic disability common to Jewish Ashkenazi parents. Allen and Laurie were determined to beat the odds with Henry, odds that predicted that within the first seven years he would develop fatal bone marrow failure.
The only ray of hope was that a perfect marrow donor could be found, and that description fit only one person perfectly - a sibling as yet unborn. Laurie, with her husband's constant support, underwent a procedure called PGD (preimplantation genetic diagnosis) to try to produce a sibling who could save Henry by the donation of cord blood.
The risks were known and daunting - the new child would have to be conceived via IVF using a specially selected embryo before Henry's crisis occurred. PGD is a controversial procedure with political as well as scientific implications, since it involves harvesting the mother’s eggs and the father’s sperm, creating embryos, then destroying the ones that will not make the perfect match needed for the purpose of saving a life.
Making herself a guinea pig for this drawn-out process was physically painful for Laurie and emotionally draining for both parents. Lots of parents wait to get pregnant, but the Strongins knew they had a time limit. The new baby had to be conceived and the embryo implanted, followed by pregnancy and childbirth, all to win a race with the health crisis of their beloved firstborn.
What lifts this book out of the grief and turmoil of losing a child is the child himself, the boy everyone wanted to save. He was a dynamo of childlike energy and determination, despite the illness that constantly tracked him and brought him to low points and lower points again and again. He idolized Spiderman and his characteristic reaction to the painful medical procedures he was forced to undergo was an astonishingly brave, adult cry of “Bring it on.”
Partway through the process of trying to produce a sibling for Henry, the pioneering researcher in whom the Strongins' hopes were vested lost his job. In the end, though the Strongins did have two more sons, the donor for Henry was an unrelated person, and Henry finally succumbed to Fanconi at the so-young age of seven.
The book is told by both parents, with Allen contributing a tough and tender portrait of Henry after his death. Laurie we hear from throughout, chronicling but not complaining about the many agonies she suffered as a woman trying desperately to get pregnant in order to save a dying son. She also keeps up with Henry’s life, loves and favorite things, conveying something of his spirit to those who will never get to meet him.
She and Allen spearheaded the creation of the Hope for Henry Foundation to continue the fight for more scientific investigation of his rare disorder and push for wider acceptance for PGD, embryonic stem-cell research and related issues. Through the Foundation, Henry lives on, with gifts of his “favorite things” to ill and endangered children.
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Saving Henry: A Mother's Journey