WHEN THE BABY IS NOT OK

A geneticist tells of her experience raising a baby with a rare, inherited disorder.

As is true for any new parent, Brown’s life changed immensely with the birth of her first child, Lily.She initially found it hard to maintain routines that had once been easy, but the adjustment period seemed to be going as expected. Then she received an unexpected call from her doctor, reporting that her baby had tested positive for the genetic disorder phenylketonuria, which prevents the breakdown of a particular amino acid, which, in turn, results in developmental disabilities and seizures. It’s a disorder that usually appears in one in 10,000 births in the United States, and according to the author’s calculations, the likelihood of a geneticist, like her, having a baby with this rare genetic disorder is about one in 100 million. In the wake of this revelation, Brown reflected on her life leading up to that moment, processing her complex feelings on reproductive procedures, as well as grief, acceptance, sadness, and joy. This work balances a compelling mix of personal experience, emotional exploration, and scientific knowledge. Although the book initially follows the thread of Brown’s memories, it’s effectively expanded by her research. For example, her discussions of fertility and pregnancy are initially introduced due to their connection to the author’s personal experience, but the multifaceted sections grow until they’re informative essays, revealing, in great depth, the broader implications of these topics and how they touch the lives of many others. Amid specific, practical discussions of caring for children with PKU, for example, she tells stories of many others, including famous names such as Nobel Prize–winner Pearl S. Buck and entertainer Dale Evans, who were also mothers of children with genetic disorders. Frequently, the book refreshingly reminds readers how all lives are intertwined.

A deeply emotional and expansive story of growth, connection, and resilience.