i n . p r i n t: For the Parents of Preemies

Preemies: The Essential Guide for Parents of Premature Babies. By Dana Weschler Linden, Emma Trenti-Paroli, and Mia Weschler Doron, M.D. Pocket Books/Simon & Schuster, 592 pages, $24.95 (paper).

by Cate House

hree women. One goal. Mia Doron's sister, Dana Linden, gave birth to premature twins. Sharing an intensive care unit room with Linden's twins was Emma Trenti-Paroli's son, also premature.

While visiting her sister at the hospital, Doron, clinical assistant professor of neonatal medicine, spent hours answering her sister's questions about the status of her premature babies. It became clear to Doron that insufficient information was being conveyed by doctors to parents. "The information doctors give to parents is inadequate, and parents don't ask everything they want to know," Doron says. "Providing enough individualized information about each baby is impossible because a physician doesn't have eight hours, or even one hour, a day to spend with each family."

Doron's first thought was to buy her sister a book on premature babies, but the best one she could find was long out of date. That's when she and Linden, a former Forbes magazine editor, together with Trenti-Paroli, a medical journalist, got the idea to collaborate on a book.

Because the issues of each premature baby are different, the authors decided to divide the book into sections, with questions and answers, so that parents don't have to read frightening information that doesn't apply to their infant. "The parents of an extremely premature baby, for instance, will need information right away on how to handle the possible death or future handicaps of their child," Doron says, "but the parents of an older, healthier preemie aren't faced with that."

The book discusses what happens during pregnancy that may cause a baby to be born prematurely, and when and how various procedures such as surgery are done. It also covers delivery, hospitalization, and the first several years of a preemie's life.

aking a premature baby home from the hospital is scary for parents, Doron says. "They're afraid of doing something wrong, and then there's the fear that hangs over many parents of preemies: will my baby have disabilities later?"

Approximately one third of extremely premature babies, those born between 23 and 26 weeks of gestation (up to 37 weeks is considered premature), have severe disabilities, the most common being cerebral palsy. Another third have less severe problems, such as learning disabilities. Older preemies are less likely to have long-term problems.

There's also the question of overtreatment: If doctors are providing treatment that only prolongs dying or that allows a baby to survive but with severe disabilities, is more harm being done than good?

This is one of the questions Doron researches. She wants to know how often treatment is provided past the point of help, and she wants to know who's driving that treatment—parents or doctors. Doron also aims to find out how much responsibility parents want to have in making the critical decision about whether to provide intensive treatment to an extremely premature infant who is likely to die anyway or to survive with handicaps. She interviews mothers and physicians to find out what type of counseling took place. She asks how much choice mothers felt they had and how satisfied they were with the outcome. The goal is to help physicians give parents better guidance.

Ultimately, though, the goal for Doron and the other authors of Preemies is to encourage parental understanding and participation in their baby's treatment. "First they need to know what to ask," Doron says.

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