Book Review

This Lovely Life: A Memoir of Premature Motherhood

N Engl J Med 2009; 361:638-639August 6, 2009

Article

This Lovely Life: A Memoir of Premature Motherhood
By Vicki Forman. 263 pp. New York, Mariner, 2009. $13.95. ISBN: 978-0-547-23275-1

A woman pregnant with twins, already the mother of a healthy 3-year-old daughter, suddenly finds herself in unstoppable labor at 23 weeks of gestation. Knowing the high morbidity and mortality for babies born at this point of gestation, she decides to withhold life support, telling the staff: “It's too soon. Let them go.” The neonatologist responds that she cannot do this, and the obstetrician agrees, telling the woman's husband, “These babies will be born with signs of life. The laws of the State of California dictate that they be resuscitated.”

The delivery of the first twin, a boy, goes smoothly. Weighing slightly more than one pound, he is taken to the neonatal intensive care unit (NICU). The second twin, a girl, is in transverse position and arrives 23 minutes later, limp and without a pulse. After resuscitation, she fits in the palm of a hand and looks “more skinned animal than human being,” her mother — Vicki Forman, the author of this book — recalls.

After several hours with no news, Forman goes to the NICU and is shocked at how tiny her son is, at the number of lines he has for fluids, medications, and blood, and at the high-frequency ventilator that causes his tiny body to vibrate. Asked for the babies' names, she says “Evan” for the boy and “Ellie” for the girl.

In the NICU, Ellie seizes repeatedly from an intraventricular hemorrhage. The neonatologist tells Forman and her husband that if Ellie survives, she will be in a vegetative state, and so they consider withdrawing life support. The neurologist, however, refuses, stating that some patients with this type of bleed are fine. Confused by the conflicting reports, they speak to the neonatologist on call, who agrees that Ellie's prognosis is grim, but tells them that under hospital policy, do-not-resuscitate orders must be a staff decision. The next day, the NICU social worker calls to say that all members of the staff agree that it is best to withdraw support, and Ellie dies in her mother's arms hours later.

Evan remains in the hospital for the next six months, where he suffers multiple complications, including cardiac disease, chronic lung disease, retinopathy of prematurity, and cerebral palsy. After he is discharged, he begins to suffer from infantile spasms, often as many as 30 each day. Forman struggles with her inability to control any decisions about Evan's care and with her guilt over her own chorioamnionitis, which precipitated the delivery of the twins. Gradually, these feelings are replaced by the realization that she knows her baby better than anyone else does, and she becomes his champion. She lobbies for and obtains hospital privileges for an ophthalmologist she trusts. The breakthrough comes in an alternative care center in Albuquerque, New Mexico, where Forman is shown how to wean Evan from oxygen, how to remove his protective head gear, and how to communicate with her impaired child through loving touch.

In the strange world of the NICU, parents crave consistency in what they are told. Fredric D. Frigoletto, Jr., a professor of obstetrics and gynecology at Harvard Medical School and the associate chair of obstetrics and gynecology at Massachusetts General Hospital, addressed this in 2007 as part of the Kenneth B. Schwartz Center Speaker Series on compassionate care. “What are hospital rules for?” he asked. “Are we thinking of the hospital or the patient? We must change to think of the individual not as a patient, but as a guest.” Parents, as well as staff, need to be part of the team that is dedicated to patient welfare.

Forman argues forcefully that laws related to fetuses, now current in 30 states, must not rule medical decisions. State laws governing life and death ignore the complexities that are involved in treatment decisions and force both patients and doctors into outcomes that destroy human dignity. This book should be required reading for all staff members who are involved in the delivery and treatment of high-risk infants.

Marjorie E. Wilson, M.D., Ph.D.
Brigham and Women's Hospital, Boston, MA 02115
mwilson7@partners.org