The XX Factor

The Joy and Sorrow of Preemies

Want to feel humbled? Read Katharine Mieszkowski’s interview in Salon with Vicki Forman, who gave birth to twins far too early, at 23 weeks, asked her doctors not to resuscitate them, and then loved her children to her utmost when her wishes were ignored. “When I learned they were coming so early and so fragile, I had only one wish: to let them go,” Forman writes in her new book, This Lovely Life: A Memoir of Premature Motherhood . Her doctors said that California law required resuscitation because the twins were born with signs of life.

Forman’s daughter Ellie lived for only four days. Her son Evan lived until he was 8, when a sudden abdominal obstruction killed him unexpectedly. Evan was blind, and he couldn’t talk or really eat. Forman knew up front, she says, that 90 percent of babies born at such an early gestational age have some kind of permanent disability. She also says that 80 percent of couples with disabled children divorce. In other words, she is extremely clear-eyed. But she is also full of love. “Kids in preschool have to stand up and put their little name on the felt board and say: ‘I’m here,’” she relates of Evan’s special-ed preschool. “And he would stand up, and put his name up. Then he had this assistive technology, a button he could push that said, ‘I’m here.’ And he would laugh, and think that was just so great.” I also loved this, in conclusion:

I think that I understand better now that you can feel more than one way at a time about something … I could want not to resuscitate my twins, and I could love them. I could be my son’s mother, and I could understand how to be the parent of a disabled child, and I could feel joy again.

Forman’s account of dealing with her twins’ neonatologists brought me back to my own awful week in the NICU with a very sick baby: “When your child is born this early, and they’re in the hospital, it’s really not your baby. The baby somehow belongs to the doctors and the team.” My son was full-term, and he recovered. But in those last hours before he was discharged, I couldn’t really believe they would let us out of the hospital with him. It felt like too great a privilege to hope for.