Saving Henry Read Online Free PDF

lucky enough to have genes that did not foretell the premature death of their children.
    Allen and I spent the first few months of Henry’s life shopping for diapers, onesies, a breast pump, hematologists, cardiologists, and pediatric surgeons. We interviewed doctors in Washington; New York City; Hackensack, New Jersey; and Boston. We settled on acardiologist in Washington, a hematologist in Hackensack, a cardiac surgeon and a hand surgeon in Boston, and a Medela Pump In Style breast pump.
    Henry, meanwhile, spent the first few weeks and months of his life doing the things that babies do. He learned to turn his head from side to side, roll over from his tummy to his back, play with his fingers and toes, and smile. He smiled when he heard my voice. He smiled when Allen or I held him. He smiled when we listened to good music. I was the first of the Ladies of the Pines to have a child, and Erica, Becca, and my neighbor Debbie Blum—also a member and a pregnant one at that—adored Henry. They stopped by all the time. Erica was playing with him one day in our family room, making faces and singing to him. Staring down at him, she exclaimed adoringly, “Laurie, this kid’s smile is too big for his face!”
    Abby, Rachel, Henry, and I spent a lot of time together those first few months. I’d strap Henry in the BabyBjörn and walk over to Abby’s house, about a mile away, and we would head to Georgetown for coffee or lunch. Henry was happy, easy, and incredibly adorable. And most important, his defective heart did what it needed to do and he never turned blue, defying the predicted path and reassuring me that I could trust Allen’s optimism.
    And proving to us that Henry was extraordinary.

Henry’s Favorite Things
    â€¢ Batman
    â€¢ Cal Ripken
    â€¢ Collecting baseball cards
    â€¢ Traversing the monkey bars
    â€¢ Going to Spring Training
    â€¢ Flushing saline through his own IV lines
    â€¢ Chocolate-chip pancakes

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M AKING C HOICES

    Allen and Henry ponder the surf in Bethany Beach, Delaware
The Strongin Goldberg Family
    L ong before the words “Fanconi anemia” entered my lexis, I had dreamed of having three kids, and always pictured myself surrounded by boys. My mother, Pat Strongin, is a great mom and a great role model. She is young at heart, active, and full of life; growing up, she took us kids biking, camping, swimming, and horseback riding. With her boundless energy and joy, her popularity extended well beyond the family to include all my friends who spent countlesshours hanging out in our childhood home. Even Allen later admitted that after meeting my mom, he decided to marry me. He saw signs of me in her and found her to be “really cool… for a mom.” My dad, meanwhile, has always been the Godfather of our family. He smokes cigars, likes a good glass of scotch, reads voraciously, thinks about things, and doles out instructions and wisdom. He is one of the most adventurous men I know. I had always imagined that I’d be the same type of parent to my kids that they had been to Abby, Andrew, and me: fun, love-filled, supportive, and completely comfortable with mayhem. I imagined a house, yard, and garage filled with sports equipment; a kitchen with plentiful snacks and family dinners; a playroom with games, drums, guitars, and a pinball machine; vacations at the beach; and baseball games on the weekends. Loud, crazy, spontaneous fun.
    Allen and I wanted to have several children, but Fanconi anemia made family planning about a whole lot more than love and sex. All of a sudden, it was a complex puzzle of genes, statistical probability, prenatal testing, and life-or-death decisions. It wasn’t just about creating life but about avoiding certain death. The very best prenatal care might be a good weapon against some diseases, like spina bifida, but it is useless against Fanconi anemia. Because Allen and I are both FA carriers, there was an