The story has been told before. A happy, successful, ambitious mother gives birth to a child with Down syndrome. She loves her baby, but she also struggles to imagine a new life with this unexpected child. In time, she comes to understand that her new life, though different, is just as valuable and happy as the one she had first envisioned. And she learns to celebrate this new life and the ideas, emotions, and dreams her child has given her.
Columbia University Professor Rachel Adams's new book, Raising Henry: A Memoir of Motherhood, Disability, and Discovery, tells this same story. And Adams's story, familiar as its shape will be to anyone who frequents memoirs, bears telling. As she explains, "We live in a world where a baby like Henry demands a story."
Henry demands a story because so many babies with Down syndrome are aborted, and the world looks for an explanation of "what went wrong" if babies with Down syndrome are born. And yet individuals with Down syndrome not only demand a story but also deserve a story. In telling the story of her family, Adams opens up the possibility of joy and goodness and wholeness for families—even liberal Manhattan families like hers— with children with Down syndrome.
Not a Medical Mistake
Part of Adams's story is her decision not to pursue amniocentesis during her pregnancy. Most ob-gyns in Manhattan strongly encourage amniocentesis, and Adams did do some prenatal screening tests that indicated a low likelihood her son would have Down syndrome. In part due to a nerve-racking amnio with her first child, and in part due to these screening results, she decided against an amnio with Henry. And although she retains her pro-choice position ...