As a mother of a child who was hospitalized every month for the first year of his life, the title of this memoir grabbed my attention and hooked me from the start. My baby was not okay, and I had to fight doctors for three years to force them to give him a diagnosis of asthma, a very treatable disease that impacts 1 in 12 people in the United States (U.S.). Now imagine that your baby has a much rarer disease, i.e., only 1 in 15,000 children in the U.S. are born with it. Your job as a parent has just become 15,000 times harder.
The author of this memoir, Dr. Jennifer Brown is not only a mother, she’s also a PhD in Genetics, an irony that hit her hard. What were the odds of a geneticist having a baby with a rare disease? Very rare. After the shock of the diagnosis wore off, being a scientist, she calculated all the odds and all the issues associated with PKU. No one and no literature painted a rosy picture for her baby. All the negative consequences of untreated PKU were dumped on her with little good news provided. Never one to give up, Dr. Brown persisted at finding all the information she could on how to treat her baby’s condition. This memoir is part detective novel, part “I’m mad as hell and I’m not going to take it anymore!” I was rooting for her at every turn, watching her overcome the double obstacles of poverty and prejudice.
Dr. Brown provides an accessible tour of the science associated with a PKU diagnosis, as well as the day to day struggle of a mother who isn’t sure where her next meal is coming from. When she chose to have a second baby, an old male physician shouted, “Tie the tubes!” at her and the surrounding medical personnel. Eugenics, an idea whose time should long be gone, popped up its ugly head—and it wasn’t the last time she was urged to have sterilization.
The author creates a vivid picture of living in Florida with the family of the baby’s father, then moving to New York to finish her academic work. She intersperses the joy of the grandparents with the violence of the baby’s father—and a judicial system that favors the father over the mother. She persevered and finally overcame poverty to become an independent woman, a highly recognized researcher, author, and patent holder.
This book is a gift to all parents and family members who welcome a new baby who is diagnosed with PKU. Not only does Dr. Brown provide the reader with her personal story, she gives everyone the science of the condition in an easy to read format. She gives parents resources that she herself did not have early on in her parenting. This is an extraordinary memoir that combines the best of personal experience, scientific facts, and a community of support in one package.
I received this book as an ARC and highly recommend this book to anyone affected by the diagnosis of PKU and to healthcare providers so they can learn more about this manageable condition.
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